Hello, thought I would make a start on the s/c issue!
Please post messages, questions here!
Kate
Sub- cutaneous infusions for Brittle ... - Asthma Community ...
Sub- cutaneous infusions for Brittle / difficult asthma
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KateMoss
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S/C ouch!
Hi
I remember when I was on S/C bricanyl and those dreaded needles. I never understood why my D/N wouldn't prescribe softsets.
I'm not sure who is still on them at the moment. I have to say it did help an awful lot with peakflows reaching nearly 600. Alas, it came to an end and peakflows are noe 260, urgh!
Lesley
Hi Lesley,
I was on s/c from 1994 to around 1999 all the time but now I only use it when needed and can instigate it at home. If I still go down hill , I go elsewhere or if still on it after 5 days etc with no improvement either.
I keeps me out of you know where!
Take care
Kate
hi all
i am very confused with all this new stuff ,
hi to kate hope ur well
mary h
I have just started sub cut, doc said wouldnt work on me but but i proved him wrong! have had 5 weeks at home since july last year so if i get only a couple of wekks benefit and at home its worth it. I had trouble getting nice sets from my local or GP even when i reacted to the normal sets but my regional lung center are getting me some nice ones. I just hope i can now get my steroids down been on 40mgs for 3 years and yes i have every side effect known !!!!!!
My regional hosp has a protocol of holidays every 6 weeks, iv amminophyline for 5 days to replce the pump anyone else have this?
Andrea
Can anyone tell me what is sub-cut please?
It ia an infusion of bricanyl (like in the inhaler similar to ventolin) that is pushed in all the time into a needle/set at home via a small syringe driver. Brompton use it a lot - its used as a treatment when things really cannot be controlled with rest of other drugs. It has given me a background stability have been on a year now bit of a pain keep getting asked if I want to put my bag down until they realised it is attatched! Works wonders for some has not been quite so good for me still on too much pred which was my hope to get it down.
Hope that helps
Den
at what point do children get put on s/c?
michael is 3 and is on fluticasone, serevent, cetirizine, theophyllin, intal, sodium chromoglycate tabs, montelukast, atrovent, azithromycin and obviously salbutamol at least once a day. he was in costa 18 times last year and 3 so far this year. im worried that they will go down this route after they have tried immunosuppressants which is the next trick up their sleeves (hes also on 10mg pred alternate days) its something that has caused me so many sleepless nights cos of all the care involved, im worried about how it would affect him. what do you guys think?
Kirsten
Try not to worry till they suggest it, I am sure it is hard. From what you have said in the past you have a brilliant medical team behind you and they will only suggest it if they think its necessary.
If it does come to that nothing to be worried about from care point of veiw honestly. It can seem daunting but once use to it is is simple and straight forward and compared to what you coping with so well already you will fly it no problems I am sure.
There are enough of us on here who will help if the need arises.
You do a wonderful job by what you say with everything you cope with. Try to put this one out your mind.
thanks very much. it has been mentioned but the doc has never actually seen it or done it before so hes trying his ""safety net"" of things hes tried before first. hopefully it wont come to that, if this azithromycin works, we may get him off the pred soon anyway!!!!!!!!!!
Hi, My 10 yr old son has been on sub cut bricanyl for 2 years. His consultant at brompton gave us the option of that or immunsuppresants. I thought the sub cut didnt sound like it has as many side effects. It really turned things around for him very quickly, his pf went up,less admissions and could run about loads more. We always went down the azithromycin route for 18 months.Unfortunatly we been hosp today and they now considering thephyllin on top of everything else as he having severe attacks most nights. He is already on loads meds ( have left a message on parents/carers board). Obviously your little one is much younger than my son but i would give it a trial and if it doesnt work at least u have tried.
Julie xx
thanks julie, again its just something that has come up as a possibility in the past, i think they will try the immunosuppressants first to see how it goes, i think it is something the cons is more comfortable with!
sub cut
Been on sub cut for four years after a massive bout of septacemia and lengthy stay in ITU meant I had to have hickman removed. over the years have had various veinal access points, ie port a cath and hickman and pic, but they have now tried massive doses of sub cut 30 amps a day via a big infusion pump. It worked to start with but this winter has been terrible and they are not certain if it is a hiccupp or I have become tolerant to the medicine they are now discussing new access. But can't decide on what. All those being put on sub cut don'tpanic you do become used to being attached all the time and it is not difficult to manage if you take it positively
Cheesecake,
Sounds like you have had a really tough time. Which hospital are you at? They are very up to date which always helps. Hope they find something to help soon.
You can get use to the bricanyl which is one of the drawbacks of using it.
You do get used to the pump and carrying is around becomes like a second handbag.
Good luck with everything
Hi Cheescake,
I have been using s/c since 1994. I use ventolin now but only on an as & when basis because I became tollerant of the ventolin and needed huge doses IV when I was not well. I was weened off it (slowly and in hospital) so have it as back up - using it now as lungs naff and got a chest infection (pondlife)
30 amps (150mls) is a lot to be pushing through a s/c site - another problem is that it could be tissuing - pooling under the skin and not being absorbed. Which needle types do you use?
I think tollerance may be the problem - your body has got used to it and needs more! I can't think of any other ideas or sollutions really.
Take care
Kate
XXX
When to start?
I am at the stage where i seriously think that s/c may help me.
At the mo im on symbicort 400/12 2 puffs 3 x day, spiriva, pred varable but continuos(60mg at mo norm 30-40) salbutamol nebs prn but at times up to hrly. I am allergic to anything with aminophyllin.
I have been through all the becotide/flixotide,pulmicort, intal,montelucast, atrovent lines so i think over the yrs i have tried 99% of meds available.
I feel i have hit a brick wall as i have daily symptoms and regular attacks and pfs are always below50% i havent been over the 50%norm for 6 yrs.S/c has been mentioned a few times but then gets put on the burner again!
Im under the Brompton but they seem reluctant to do anything else just monitor. Have been tested for many things and i know im clear of bronchiastsis(sp?) and VCD and i have a long list of allergies to boot.
Has anyone any ideas or suggestions as am getting a tad frustrated. sORRY TO MOAN.
Hi Hopalonkp - i don't have any ideas but I am at the same stage as you. I can take amino but am not absorping enough of it to make it effective. I am on 2 hrly salb nebs, flixotide, serevent, amino, pred. My local costa is not keen on idea of s/c as they see it as a faff and the brompton are doing the same with me - monitoring.
i am currently struggling to stay at work and out of costa after last years marathon admission but has got to the stage that i am now having to avoid gp as have already refused admission twice and not allowed to refuse a third.
Who do you see at the brompton? Let me know how you get on.
Rusty
amount of subcut
obviously the tolerance aspect has been looked into. My consultants are excellent but any less and i have respiratory arrest. I do not have tissuing problems has I have a special pump and giving set and needles that administers the drug under the sub cutaneous but not directly into the vein not sure of all the medical jargon. Been to brompton and birmingham and this is what they came up with until they decide on a venous access. I take each day as it comes I will not let it get the better of me. It does interest me reading all your views. is anyone else allergic to latex as that is a road they are now looking down, also they are contacting someone essex with similar problems to consult with that consultant.
sc not for me
hi all well i go into hospital soupose to be for 3 days 3 weeks later i get out. went to have a nice moan and couldt find you all . so this is where you are all hiding. went infor my sc pump and my con started to reduce my steroids straight away under controlled situation . eventually started the sc after 3 hours my heart rate went through the roof . stopped it for a day and started it again with a smaller dose same thing happened . this continued for days . at this point im crackn up as im not getting home. so i have to say that it was not for me . after waitn 3 months for a bed to find out it was not the right decision for me. so the good news is im off the pred and now taking 400 pullmacourt 4 tines daily plus seratide and spriva has sny one any info on pullmacourt dose it work/ glad to be back
caroline
i had same problem trying to get sub cut, its now not used as much because of the side effects and other things now on the market. My cons at my regional lung cetre didnt want me to have it as said wouldnt work as i have muscle dysfunction aswell as severe asthme!! he wanted to get pred down first( been on 40 for 3yrs got down to 20 at xmas then local put up to 60mgs when had pnumonia) he said pump would work at first but be ineffective quickly!! so seeky me got my local to instigate when in there ( cant get to other hosp when acute too far!) and now he has reluctentky took over. It is working so far been home 3 weeks and well, even managed to get out the house for lunch with friends, this a big step as only had 5 weeks at home since last june untill now.
Heres to many mors lunches
Andrea xxxxxxxx
Caroline - sorry s/c didn't work out for you. XXX
Cheescake - I live in Essex! I have a feeling which consultant your cons may be contacting! I have a friend in a similar situation. Anyway, I am latex sensitive - contact with gloves mainly. I can't really suggest more on the s/c front as I have only every been up to 30ml of anything via a syringe driver. I am lucky that I managed to get away with using the infusion via s/c or when my skin got bad, I had it at home via IV Venflons for a couple of weeks to give my skin a rest.
Are you using s/c Bricanyl or ventolin? I use Ventolin now because there are slightly less side effects but it is 1mg/1ml, but that is usefull because you need less volume. Where in the UK do you live?
Anyway, keep us updated with your progress - I hope they can find a solution.
Love
Kate
XXX
Hi Kate Thanks for your message I don't know the consultants name in essex but let you know when I do.You say you have a friend in essex that has similar problems is she very seriously ill. I am clutching at straws and hoping he can come up with something. My consultant wants nme admitted again but I'm standing firm at the moment. trouble is I can be struggling by one minute and have a respiratory arrest the next. Do you have such problems or are you under more control. Do people sometimes think you are making a fuss especially the nurses and doctors in hospital or are yours more understanding
hi Cheescake
I think my friend does have a lot of s/c but I think she is a little more stable than you.
Anyway, My asthma is a little more stable, well a steady state of Instability / chaotic. but I do go down hill fast occasionally and need to use epipens.
Most nurses & doctors are good at recognising what I need, some newer ones occasionally think I am making a bit of a fuss but they usually end up giving me what is says on my protocol in the end.
Keep us posted
Kate
xxx
been told s c is next option how long do you have to wait to get the treatment...
also what if sc dont work....
pearlania I am on sub cut but your question is rather general to answer some people wait ages others get it quickly din't your doctor give you any information?
I waited about 3 months only because pharmacy went off their trolley at thought!
Am willing as well as others to answer anything you want.
Den
Cheesecake - now that dillon den is subsiding (less pain killers) your dose sounds humungous! My consultant tells me that BNF suggest 8mg is max (16mls) I am above that already and can go up to 25 mls when unwell as you are right you do tolerate it. How do you manange to get such a volume in cause even 25 mls does pool under skin? I am interested in your route as if I need to go up again would like to know what you use - the other suggestion for me was a permananet iv line and the dose through that? This seems a rather drastic step take, given problems with infection on the pred.
Hope you don't mind me asking and hope can get answers from the essex connection
Den
hi red den. My doses as I said are way above norm, Subcut is only temporary till they decide on another iv access. I have read all your other posts, perhaps it is because I am very unwell at present or because I am new to posting [been reading the old site for months but only recently got the confidence to try to make some friends] I have lived with people questioning my doses for the last two years, luckily I have a brilliant consultant who would do anything for me. I get the impression I have upset you from your other posts. I am 100 percent genuine and just wanted like people to talk too in the long struggling hours.
red den That post sounded a bit negative to you, it wasn't meant to be. I will happily answer your questions, but in your other posts you tell people not to be specific with medication. That is the bit that confused me. Sorry I just not used to the ethics of the site you have all obviously been good friends for a long time. I just wanted some support.
Cheese cake
There are a few of us who are good freiends and we are always willing to help and support people who need it. As Red Den worte the dose you talk about is so far off the normal mark . I am above the prescribed limit for very good reasons but I think the trouble is those of us that use a sub cut find it hard to understand someone being on 30 ampoules which is equivalent to 75mg ,150 ml. Small doses can send a persons heart rate up as one of the users has stated and anything above 8mg, !6ml certainly makes a huge different to someone whose heart doesnt normally cause much a problem so can you see why it seems so unusual that you are on 75mg 150ml through a subcut.
I pool under the skin on the dose I take and that affects the delivery so to pump that amount in must be very hard for you.
How do you manage with the syringes?
The warnig post is not aimed at you personally, there were problems before on the previous board about doses of other drugs which if you read back you will see.
I wish you all the best and hope they find you an anlternative soon.
Thanks for the reply. I am not interested in any arguement or such. I can go through the whole of my regime but I see no point. I do not use a syringe driver I have a cad plus ambulatory infusion pump. the medication is made up each night. I use 100ml bags of saline of which 75 ml is removed and 15 amps of brcanyl is put in then this is run at 7.5mls an hour then about 12 hours later another is done. I could go on but whats the point. like i said what I had hoped or was support from this site. When I get admitted to different hospitals to my own my husband has trouble convincing them my protocol is correct so i had hoped I wouldn't have the same on here. I do have to take a lot of other medication to couteract side effects and obviosly steroids but I wont go there. Thanks for listening and I am sorry no one was interested. I wont post again it was worth a try .
Cheesecake
The post about being careful was not directed at you as such as Speedy said we had big problems last year. My worry on this site is that someone will decide that if you can have such a dose then perhaps putting theirs up is ok and the consequences could be dreadful. I do say what I am on at times am just wary of giving the idea that they are ok - i do 2 hrly nebs as normal for most thats a trip to A+E. But its not just for sub cut either my max pred is 80 many told only go to 40 and I know it can make people very unstable mentally someone could easily harm themself. Had a friend once who became suicidal on even a small dose.
There is no need to leave. I am sorry if it made you feel got at but it is a huge dose - not that those of us on it are experts but you have to agree is well over the norm as you say even hosps question it. Its a real problem of being suspicious after last year and yet wanting to help people who are struggling to live with this horrid illness.
However if that is what you need then thats it really - its like amminophylline I take a wacking dose but then I am good at getting rid of it as well as huge amounts of potasssium.
Hope you stick around - I am still interested in the route you use though as an alternative to something more permanant like a hickman line.
Den
Cheesecake,
please keep us updated!
I have used CAD pumps in the past but for only IV. they are quite light.
What needles are you using for s/c?
Hope you get some answers sooooon
Take care
Kate
Cheesecake
It is up to you about posting but there is no need to feel you cant. It may seem frustrating that there was some doubt but as you said hospitals doubt it and you did orinally say a subcut which in our termonolgy is what we use.
Surely you would prefer to know that the support you are being given is fair open and honest which is all that most try to do on here and if you could read some of the old board I am sure you would understand better.
I do know how hard it is convincing hospitals of unusual doses and meds as I am unable to take steroids of any sort and hubby has had to get very angry in the past with docss when they have been wanting to give me steroids and being told noone can be allergic to them. We have even been called liars by an out of hours Gp so know only to well how hard it can be.
Caroline
Speedy. Thanks for the reply. I am in no way argueing with any one or critising. I just thought that people that had been through it would be more understanding and ask questions before stating that I am making up my doses. I do run sub cut via the cad pump I wish there were spaces for photos so that I could prove it (not that anyone would want to see my stomach) I have had hickmans and porta caths and pic lines and this as I said at the start is a temporary measure. But I am not going to waste breath trying to justify myself, its hard enough to breathe anyway. Sorry for any problems my postings have caused, and I am also sorry no one will take me seriously. And think I am so one who could make it up or invent my illness. I wish you all well and hope you all find some cure or comfort soon.
Cheesecake I don't want to get into any arguments either but can not see how my post implied you 'were making up dose' or that you were 'making up you illness' or 'not taking you seriously'. I am really interested in the amount you take and the route as I can see my dose going up over time.
You have to admit it is a huge dose I am surprised that you did not expect some questions at the amount. We all want to offer help and support to each other so stick around if that is what you want.
Den
Cheesecake please go to the old camping site and do a search using the word Chandra and then Jane. You will then understand why we are so careful about what is posted. Several oon here are not only on sub cut etc but are also medically trained. For the protection of ourselves and others we ask questions not to catch people out but to understand and to know how we can help. Also please imagine if such a high dose works for you and some one esle is truggling they are naturally going to be curious as it may work for them. As you said you have been questioned my medics so naturally why are you shocked when we ask questions?
Can I step in here and ask suggest something from a purely selfish point of view.
I am supposed to be going for a trial of sub cut in a few weeks time, all this talk of dosage and over dosage is making me more nervous, I am really worried about the side effects and I guess because I am pinning a lot of hope on this I am worried it won't be for me and all my hopes will be dashed.
Cheesecake, it is true that some of us are on very high doses of some drugs and it is also true that people have come here pretending to be something they are not. Some for attention and I even heard of people trying to fiddle benefits by using info they got from this site. Maybe you could alter your settings and allow messaging then you can chat dosage etc without worrying everyone else or giving those who for their own reasons pretend to be asthmatic more information than they should need.
Bex
Bex had just been about to say same thing to Cheesecake that sending a message and continuing discussion in private would be better. Try not to worry too much about the sub cut they will work out what you need. I started slow and built up which was good for me some start on bigger doses straight away.
I was fortunate cause it did work so here is hoping you get same results very hard when you pin hopes on something and then have to wait to try
Den
heart rate
hi i am very interested in whats been said about briacal as i am not long out of hos having been on an SC trial for me as i have said in an other post it senttttt my heart rate out of control even on 4 ampuls so they didt go with it. caroline
Caroline it really dose not suit all plus highlights the problem of side effects and how some people can tolerate things that others can not. I did wind dose up slowly and that did help me. So glad you got off the pred though wish I could do that!
Take care Den
sc
yea this is the thing about our meds some work so well for others and not at all for some but to be honest i did think that it was invasive and i was dreading the thoughts of going home with it i no its great for some people and im really pleased that it suits them .and ther was the cost 1500 euro as i was not entitled to any form of help but a small privce to pay if it had worked.
What needles do people use? Do you have scarring?
Hi
I've been on s/c for just over a year and have found that my body is becoming more resistant to the needles. At one point my needles lasted 2-3 days but now 1 day is my max. I have scarring as well and often get scabs on my stomach- which I am hoping over time will disappear. I have tried in my arms but they last a matter of hours before i need to take them out- i then get v. achy arms and have found they bruise alot easier than they used to. I am not really comfortable with them in my legs, so am running out of ideas. I may need s/c immunoglobin soon, which won't help matters as it is so thick. I use thala sets at the moment, i did use sof-sets but did not get along with then. My nurse recently gave me silhouettes but am not sure about them. I am on 7.5mg but am hoping to go up to 10mls soon. I am 15.
Any ideas or suggestions would be welcome
Thanx in advance
May x
Hi Maysie,
sorry your having problems with your sites.
I started initially with butterfly needles (not comfy) then after a few years, Sof-sets came on the scene and I have been using them more or less since.
Recently however, I tried Silluettes and they work very well. Give them a try if you can.
I Haven't tried thala sets - not come across them.
Have you tried the tops of your legs - outer thighs are best, or I used to use the fatty bit at the top of my chest. (this is OK for needles going in at 45 degree angles if you have enough s/c layer there)
Steroids don't help with the skin problems either as they cause more brusising, thining etc. Also the skin can get tough in places too.
You could try round the hip area as long as the skin had a good s/c layer and looks OK.
Try to rotate the sites as much as possible and if an area looks yucky, try and leave it at least a week to heal - difficult when you are running out of places to stick the needles.
Also, the tape / sticky dressing can affect the skin. look at different types of tape to see which suits your skin too.
Are you using ventolin or Bricanyl?
Hope this helps.
Take care
Kate
SUB-CUT ADVISE PLEASE
Hello All.
Taken me ages to get logged onto this new site!!!
Aaron is on 16 mls bricanyl via his sub-cut and we have to change the soft-set every 24 hours, I have just started drawing up his syringe every 12 hours, as he was only getting 3 mls of sodium chloride. He is getting an infection every week, we have tried tops of legs, arms and chest, but the needles come out of the top of his chest, it really hurts him at the top of his legs and arms. I have discussed this with the GP, District Nurses, etc, I know there are other ways to administer his medication, but no-=one is telling me how. He is 11 years old, his medication is going to increase and I am becoming really concerened! He has been tested for diabetis last week, he needs antother potassium check, he has already started with arthritis! and now he says that he doesn't want to take any-more medication, cos he doesn't want asthma any-more, he has a wheelchair at school and he really gets a hard time from other kids as he has Aspergers as well. I think he is becoming quite depressed now. I have expressed my concerns about his immune system, as every time he is in hospital, he is sent home as he catches one kind of bug or another. He is constantly catching colds etc from school. There is no-one in our area with a sub-cut for asthma, so it is all very new to our surgery. He has had this for over 2 years now.
Going for tests for sub cut
Hi all
I have just got out of hospital and they are now talking about testing me for this sub cut. they have given me all the pros and cons but i would like to hear from people that are using it and how it has helped of hindered their life.
Thanks
message for Vanessa
Hi Vanessa,
sorry that Aaron is having problems with his s/c.
Do you dilute it? I use it neat, that way there is less fluid going in and less tissue to irritate. Also, I use s/c ventolin instead of bricanyl because you need less in the syringe - half the amount as it is neat 1mg/1ml. Unlike bricanyl which is 0.5mg/1ml. Perhaps you can suggest this to your consultant.
Sites - seems like he has tried everywhere possible. Do the sof sets need changing every 24 hrs due to discomfort, or is that what has been advised?
Another set you could ask for is Sillouettes made by the same people as the Sof- sets. these go in at 45 degree angle with a removeable needle too.
Check out this web site for the needles available
applied-medical.co.uk/index...
they can send you free samples as well.
With regards increasing the dose, I found my body got used to all the ventolin and so needed higher & higher doses. I was weened off it completely because I had no lee way with needing whacky doses of IV ventolin and it was affecting my heart a bit too. I just use the s/c as & when needed - I am on 10 ml of Ventolin at the mo.
I don't really know what else to advise regarding other routes.
Please send me a private message if you want to discuss more etc.
Take care both of you
Kate
Message for Cheesecake
Hi Cheesecake,
noticed you are on line!
How are things going? Have you sorted you your s/c infusion yet and have you got any answers from Essex Cons?
If you want, send me a personal message if you want a chat etc - you will need to amend your account so I can reply.
I am back on s/c at the mo as had a bit of a naff time - Been on 15mls of ventolin, but down to 10 mls at the mo.
Take care
Love
KAte
XXX
message for kate moss
Thanks for the message. been in hospital got out sunday morning. It was nice of you to post but I feel really scared to take part in any conversation on here. I would love to have some one to share with but I can't cope with all the bickering. Thanks for the thoughts I do hope you get on well. I am not doing so well at all
Hi Cheesecake,
sorry you have been in hospital.
If you still want to chat privately, click on your profile to alow messages and send me a message. ( you can re tick the box after we have sent messages etc) I would like to help if I can. Just ignore the bickering - I do, but I know it can be intimidating sometimes.
Take care
Love
Kate
XXX
Tip to help sore sites
I have been struggling with my sites recently to the point my stomach is red and inflammed as I am reacting to the adhesives.
I have tried all different dressings but today after consultation with dermatology at the hospital I have been given a spray. Once applied it forms a protective layer over the skin so you can still stick the dressing on top but it portects the skin.
It is called"" CAVILON"". It is used for ""Protective barrier against aggressive adhesive products"" If you google the name you will find the maker and be able to read up on it.
I wish had been told this exist before my skin had got so bad I have asked advice from district nurses and gp, noone ever mentioned it before but now I have it I am hoping it will help.
Thought this might be useful info for others. I can confirm ti works too well so far in the short term anyway.
It can be bought over the counter but is available on prescription
sites
hi i am new to the message board but ama friend of kates, hi kate!
just thought i would let anyone know you may want to try using the flanks of your upper buttock (your Love Handles) i have found this a very good area for the infusion and find most of the time my sites last about a week.
regarding Cavalon, it is a very good product but not widly used, most district nurses should be able to prescribe it, make sure you get the spray as the cream is not as effective.
i was reciently told by an asthma nurse that because i seem to have become so brittle, that i may have become tollerent to the Bricanyl, i have been on it 7 years, and the best advise she gave me to get better controle was to come off the pump completly for 3 weeks!! i tried it and ended up in hospital after 4 days, i have found because i am ok at night i can come off it then and put it back on in the morning, i am coping ok at the moment with this arrangement.
I had funding from the Girlguide association to buy a new pump, it is called a Chrono, it costs around £800 but is so much smaller than the normal Graseby pumps, i would highly recomend them, for info google Chrono.
regards Georgie x
Hi Georgie and welcome to the message boards!!!
I too became very tollerant of the s/c (I use Ventolin) and use it when needed now - although been back on it over a month. I needed silly doses of IV evntolin when in hosp etc. Glad you can manage OK at night without it - I am the oposite in some ways - worse at night.
Interesting info about Cavalon - not heard of it - I have in the past used a bit of tape that I am OK with , put a small hole in it then put the needle through that with the other tape on top.
AMT do the Chrono pumps - let me know that they are like - seen them on the web site!
Anyway
Take care
Love
Kate
XXX
Kate
I have now had my chrono for 4 months and have never looked back. It is fantastic. About size of mobile phone easy to set and will fit into your jeans pocket.
It has made a huge difference for me due to my other disabilities but even without that I would reccomend it to anyone. The tech support form AMT is brill to thast if you need it. We got a bit stuck in the first few days and rang and they talked us through it and sorted it out. The rep will visit youat home to show how to use it in the beginnning.
My pct funded it as it is not much diffence in day to day running cost as the greseby just the special order for syringes and the intial outlay.
As for cavilon I have the spray and my skin is finally starting to improve as it got so sore i could only leave them in 24 hours if I was lucky so i hit a vicious circle of no where getting a chance to recover. I only wish I had had it before when i first started out
Regards the Chrono, If I used my s/c all the time I may be able to justify asking for one but as I use it on & off, they may not entertain the idea.
When I take my Graseby in for servicing / fixing , I just pick up another one, they occasionally give me a really battered old one! Although I think most of the old ones have gone now. Mine is on permanent loan from the medical Equipment Library at my local.
anyway,
Take care all
Kate
XxX
Just annoucing on this thread that I am now on S/C terbutaline to start with 7.5mg per day back in month for a review.
Bex
Shak'in Becky
Anyone got any tips for a total newbie on drawing up and siting needle when shaking like the proverbial leaf. It is comical watching me holding the syringe in one hand with a green needle on it and the phial in the other trying frantically to get the 2 to meet to draw up the terbutaline without stabbing me or anyone within a 5 yard radius! As for putting the needle in well the less said the better I don't mind doing it and it really does not hurt but again the shakes make it much harder.
Bex
Bex - snap top off ampule. place ampoule on surface - stick down with tape or blue tak! aim needle into top of ampoule & draw up.
Needles - sit down & try to relax - grip skin tightly & grip needle firmly - be bold &
stick the needle in!
The shakes should calm down with time! Honnest!
Kate
XXX
Shakes do improve Bex promise. Great idea kate to use blue tack or tape.
May be worth showing one of your family when you get home then they can helpespecially if you go through a rough patch and have to neb a lot as well.
Kate, fab idea I think docking at the space station is easier than me getting needle into phial both are moving targets! I will give the blue tack a try!
Speedy I am glad the shakes ease off, how long will be take!
Bex
Speedy, good idea about friends & family.
I have often thrown the syringe etc ad friends when trying to set it up after failing with nebs. Paramedic friends V useful! LOL!
KAte
xxx
I will deffo be showing the elder kids etc how to set it up, my son even offered to learn how to site a needle which I thought was brave of him. My daughter ran a mile just looking one I took home to show them last weekend.
Thanks for all the help (see Kate I told you I would be asking 
)
Bex
My son was fascinated by it all. Hubby was very needle phobic but has improved no end since I have been on the subcut. He even offered to put the needle in for me.
Bex I think the worse of the shakes was over after about two weeks. Its a good dose you are on so give it time, hard as it is I know. Having just done two increases a week ago I have been feling it but now starting to settle again.
Logistics
I am getting used to my extra appendage but things are taking a wee bit thought. Having a bath was OK cos I have sort of shelf by my bath which I could put the pump on, getting dressed means I have to gather everything together put pump on bed and get dressed instead of normal wandering around the room pulling clothes out of draws etc. Last night I put the pump by pillow and apart from rolling onto it once it was fine but did not sleep as well as normal I guess I was just concious it was there.
It sounds like I have got it licked but I lost count of the number of times I put pump down and wandered off in the last 24 hours. I guess like when you have IV's in the end it will become second nature to make sure I am holding or have the pump in my bag.
Do they do extensions to make the lead longer an extra metre would make my life so much easier, currently I am using green butterlies which have tube of about a metre which is not really long enough.
Bex
Bex - do you have a bum bag to put it in?
Also, when having a bath or shower, you can disconect briefly the line from the styringe and bung both ends with IV bungs! (Make sure syringe is out of pump or it will jam and alarm !)
Yes there are extension lines you can get but you end up priming lots through it unless you put the extra in the syringe to prime it or change it earlier that the 24 hrs.
I prefer the current lenght 112cm as it then just sits on the floor if I need to put it down (eg washing) but longer you may get tangled up. When getting dressed, I automatically hold it in one hand to get clothes or put it in the bag with belt first off! I think it is prefferable to have it attached to your body then you can forget about it and not walk off with it crashing to the floor. It can sit in the back pocket of Jeans without the clear cover ( never bother with that anyway!)
Take care
Kate
xXX
IV bungs now why didn't I think of that. I suspect the whole line length problem is made worse cos I am almost 6ft and have stupidly long legs (35"") so the driver would always end up swinging from me! I have an bag I am (I brought another today) that I am using, it is only when getting dressed or just into bed that the pump is not in it. I guess it will become 2nd nature to either grab the pump when I move around or make sure it is in the bag ATM everything is all a bit new.
I have sof-set in today (kindly lent to me by someone locally who has sub cut) I have called AMT who are sending a couple of samples, whilst my supporttive GP sorts out who funds what and from where!
Bex
I just need to get my little head around what is going on with lungs now. From what I know my biggest problem was that in what seemed like no time at all my airways would just close up, so it was taking lots and lots of nebbed ventolin to finally get through to them and open them up and sometimes even that did not work hence the IV sal intubations etc.
Now I am speculating that now I have the bricanly running in all the time it helping to keep those airways open, I have my wheeze back before because no air was getting in i had no wheeze so I guess getting back my wheeze is progress (oddly enough) .
Does this make sense to others or am I way off the mark? Sorry to go on and on but I was so concerned with getting the drug running correctly and administering it at home I did not ask about how it works.
Also huge thanks to everyone who has been helping me, a member of this board (i won't name without permission) is sending me bungs, people are IM'ing offering phone numbers and support, this is the board working at its best and my heartfelt thanks to you all.
Bex
Bex - if you are wheezing at least the air is getting in.
The other thing you need to watch for in the future is your body getting tollerant (used to) of the bricanyl. For me this took a few years.
Also, I still had dips and ended up in even with the s/c.
Different people react in different ways.
Also, I found that being off the s/c I became more prone to sudden severe attacks.
7.5mg of bricanyl is a reasonable dose to be using. there is room for increase in the future if you ever need to. (I had 15mg once!)
Anyway, glad you are getting bungs! Also, being 6ft an extension will help! I am only 5ft 3 just!
Take care
Kate
XXX
Kate, Yepp I was thinking wheeze meaning air getting in was a good thing too. I was warned that I could ""tip over"" with less warning than I had before and that I may need to revise my thinking re when I need to head in and when I don't I guess I will try to er on the side of caution for now and play it by ear.
As to be becoming tollerent i guess that is a bridge I will cross when I get to it and hope it is a long way down the road. For now I am enjoying the bliss that is waking up able to breathe. Like so many I had not realised how dreadful and how impact it was making on my life until it was better. I think I would rather cut off my right arm than hand over my pump!
Bex
Hi Bex, glad to here you have managed to get home. like kate said wheezing is a good sign , but you will need to pay carefull attention to what your lungs are doing. now you are on the s/c they may behave differently, such as you may now find you dont need so many nebs or you may find you are getting worse quicker, you will just have to see how you are now you are in the real world of home. if you do PEAK flows this will be a good time to keep an eye on them.
Another thing that you may notice now that the sun is shining and if you dont have major hay fever and can go out and enjoy the sun you may notice that your skin gets a type of hives rash. skin on terbutaline can be more sensitive to the suns rays evem if it never was before.
i dont mean to be sounding negetive, but these are the sort of things that hospitals dont tell you, we as patients on these pumps learn theese sorts of things for ourselves.
good luck and hope the wheezing improves for the better,
George xx
Hi Bex, glad to here you have managed to get home. like kate said wheezing is a good sign , but you will need to pay carefull attention to what your lungs are doing. now you are on the s/c they may behave differently, such as you may now find you dont need so many nebs or you may find you are getting worse quicker, you will just have to see how you are now you are in the real world of home. if you do PEAK flows this will be a good time to keep an eye on them.
Another thing that you may notice now that the sun is shining and if you dont have major hay fever and can go out and enjoy the sun you may notice that your skin gets a type of hives rash. skin on terbutaline can be more sensitive to the suns rays evem if it never was before.
i dont mean to be sounding negetive, but these are the sort of things that hospitals dont tell you, we as patients on these pumps learn theese sorts of things for ourselves.
good luck and hope the wheezing improves for the better,
George xx
Georgie, thank you this sort of tip is very useful the benefits of S/C far out weigh the cramps, tremour (I have had to alert the local authorities cos I am currently registering on the richter scale), heart going like a stamp hammer etc I will add possible hives to the list.
Bex
Bit of blip last night, I am wrigger in bed at the best of times and it seems I wrapped myself up so tighly in the line that I pulled the syringer out of the driver! This must have happened going by how much jungle juice was left in syringe at about 5am. 7.30 I woke up wondering who had ordered an all out lung strike and panicking slighty as was this is not supposed to happen anymore! Before I called in the green men I checked pump found the problem re-loaded syringe appeased lungs with a few extra nebs and settled back to sleep. Guess who is shattered this morning tho!
I wonder if I can put some micropore over the syringe and driver to prevent this happening again I knew that little black rubber thing would not be enough if I got wriggling in the night.
Bex
There is a protective casing that you can put over the pump driver, although it does make it a bit bigger and more cumbersome.
Dont see why stickky tape although it might make the the pump sticky unless you clean it off each time. Why not a couple of extra thick rubber bands or better still have you got a velcro fastening strap. You can get them from outdoor shops.
These things do happen pain that it is and then so annoying being on catch up. Hope it doesnt set lungs back too much.
Drema about that fast bike bex : )
I am using the cover, I do have some of those velco type adjustable band thingies somewhere I will look them out. I guess for the 1st few nights my sub-concious was aware of the pump and I kept a bit more still in bed when I woke up this morning I had the line wrapped around my middle and the pump pulled up into my side. Heyho another lesson learnt I guess.
Maybe I was dreaming of riding that big bike and that is what did it! Thundery today down here yukk!
Bex
It lept out again this morning. That little rubber thing is not over reliable is it! Its thundery here and lungs are rebeling, have a mega stressful day tomorrow so I need to be well and I need all my meds doing what they should be doing not leaping up out of drivers etc Its now held in with a some micropore as anything else means I can't use the protective cover. Lets hope that works.
Bex
Hi bex,
The little rubber bits do need a firm tug sometimes to make them stay in place.
(Carefully though as they do perrish & snap! )
Not had that problem before! You must really wriggle!
Also try cleaning the little rubber bit and the slot with a sterette to remove anything like grease / creams etc that may have got on it and made it slippy.
Kate
Is it possible to stick a strip of velcro on the syringe and on the driver? I've seen it done with some drivers but don't know if it would work with yours, just an idea.
Hi Emily,
Nice suggestion , but means peeling off the velcro from the syringe every day to stick on a new syringe and hoping the sticky bit holds!
The syringe drivers most of us use are the Graseby MS26 type ones ( often used for Morphine)
Some people here use one called Chrono which is quite different! Only seen photos!
Kate
XXX
Hi Emily,
Nice suggestion , but means peeling off the velcro from the syringe every day to stick on a new syringe and hoping the sticky bit holds!
The syringe drivers most of us use are the Graseby MS26 type ones ( often used for Morphine)
Some people here use one called Chrono which is quite different! Only seen photos!
Kate
XXX
Yepp MS26 here. I would need new bit of velcro twice a day. However it is a thought. A small bit of micropore over the syringe and onto the pump seems to be working although I suspect I will need to de-gunk it every now and again.
Bex
We dont have much luck here with the little black bit, Sean has managed to snap three which meant replacement drivers. WE use elastic bands or daughters hair bands, seems to do the job.
Julie xx
I had a close look at my driver and its black bit, I think it is looking a bit perished so it might stretching as it sits on the pump. When I pop into RBH on Monday I will see if I can get swapped.
Bex
Stupid Question
How long do the batteries last? I am carrying around a spare but I just wondered how long they normally last on a MS26?
Bex
Batteries last just over a month - I change mine every month though.
(I used to put a sticker on with the date to remind me)
The Duracell professional ones are the best, other Duracell ones work, Boots own brand are too long as are some other batteries. Also IKEA ones work too and are the cheapest!
I used to get them from med suplies but they don't seem to suply them anymore or either I have to speak to the district nurse to authorise them! (Daft!)
Kate
Cut my thumb today! Knew it would happen in the end. I was getting a just tad over cocky and decided instead of snapping them held inside tee shirt or skirt i would just go for it, small shard of glass splintered off and I cut my thumb. Serves me right I guess 
Bex
I tend to do it ever time, so no longer allowed near them as ended up with more blood that bricanyl : ) The sharps bin manufacturers make a special thing to break them off. Not looked into it but found one on their website. Hubby can continue for me.
Hmm speaking of which I must call my local council and get my bin swapped next week. In Ealing you take yours down to local Dr's and they swap it for you. In Newton Abbot the local council do it you would have thought it would have been the same everywhere but I guess like everyone getting funding for sof-sets that would just be too easy.
Bex
Hi Bex & Speedy,
Ouch!
Been there done it too!
Some drug companies have ampoule snappers as freebies / promo material.
I just use the paper from the syringe wrapped round now.
Regards sharps bins I get them from my surgery from the nurses. They did put then on prescription but the chemist could only supply 1lt with s tidddly hole - totally useless! now get 5lt + jobs!
Kate
Sharps bin service here is excellent. You will come under same Bex as the little van goes north east south west etc in Devon. I ring council they log it down and then put it out on wednesday night on doorstep or where ever you tell them it will be left ie shed etc and they come sometime in the early hours as normally gone by 5.30am. Who ever it is is so good as if I call and forget to put it out he still leaves me one and I put it out the next week.
Its like little elves and magic.
Oh and if its bank holiday they run a day alter like the bin men.
Speedy, yepp that sounds right. The woman said it was Wednesday, all sounds very simple (assuming they can find me).
Bex
Re-sites
Day 3 of sof-set and last night it was feeling sort of sore so when I changed syringe i also re-sited. At about 3am I woke up with a stinging pain right where the new sof-set was. I got up and had a look it all looked OK. At 3.15 it was hurting so much I decided despite being half asleep I would re-site again.
Any ideas why the new one was hurting so fast (5 hours) cos I know how expensive they are and I felt bad at needing change one so quickly, I tried to hang on but it felt like someone was sticking a red hot needling into my tummy.
Bex
It sometimes does happen. I find my left side is more sensitve to puting needles in than my right dont know if there are more nerves that side or something. you did the right thing and certainly dont worry about cost. At the minute I am having to use a new needle/site daily. I have had times as I am sure most of us have where it stings bruises etc sometimes no reason can be found. It has to be comfortable thats all that matters.
I get the same thing sometimes - It can happen with any needle.
Sometimes it is just a sensitive spot or it is sited near capillary vessels and will, when taken out, bleed.
It is the sodium chloride (salt) in the Bricanyl / ventolin that makes it sting!
No solutions really apart from resiting! (Or trying to ignore it LOL)
Kate
XXX
Thanks folks, there was no way I was putting up with the stinging (it woke me so it must have been bad) I just feel bad about using up expensive sof-sets and wanted to be sure I was not doing anything stupid.
Bex
Ouch!
It is happening again, got to day 4 and site starting to get uncomfortable so I re-sited it and the new one is stinging like mad. It is getting depressing I must be doing something wrong, I have started to get really nervous about siting them again. I am going to leave it in place in the hope that over the next few hours it subsides if not I will try again before I go to bed. Sorry to winge but as you can tell this is getting me down a bit.
Hugs
Bex
I am little more sorted now thanks to Speedy for her help. I think that I am putting it too close to my tummy button (about 2"" away) I re-sited over on my love handles and low and behold a comfy re-site. I will try the other side next time I need to resite. I am also having a problem with the ""dressing"" thing from the sof-sets I seem to be re-acting to them but I have got some of that cavilon stuff now so hopefully that should help.
Bex
Hello, well i have just got home with my new toy - sub cut pump. Am bit apprehensive etc. Off to Gps tomorrow to sort out prescriptions etc and also to find out if i can get sofsets.
Will probably be asking loads of silly questions over the next few days so please just tell me to shut up if i get overly annoying.
rusty
RustyI
I am sure they wont be silly cause I can guarentee most of us will have asked the same questions.
Ask away, if you are worried you can pm too.
Hope it improves things for you
Caroline
Hi Rusty, I'm really pleased the trial has worked out well for you. It must feel great to get a pf that you havent reached in two years.
Of course your questions wont be silly, and as I found out recently new questions pop up even after 2 yrs of use! I'm sure the others here will be far more knowlegable than me but if i can help in any way please shout.
Good Luck
Julie x
Rusty, you should see the list of questions I asked when I first started
Huggles
Bex
Has anyone ever used something called ""bd intima"" instead of sof-sets/butterflies for subcut? I went to collect my sof-sets today and the ward said they had changed over to these things. They have a really short (10cm) line on them, so will need a connecting line to the syringe (sister hadn't realised that!), and look like a complete faff. I have no sof-sets left though so I'm off to give this thing a go. They only gave me one decent length connecting line too, so thats got to be an infection risk.
I was not in the best of moods about it when I left the ward, and more grumpy when I had what is becoming a twice daily argument with the car park staff cos my swipe card doesn't work - Ive been to the office twice a day for a week now and it STILL doesn't work grrrr. The upside is that I keep getting out the carpark for nothing when the queue is too big!
Right, needles then bed!
s
Sounds like I use to sue before swapping to silhoetts. Does it have a yellow rubber butterfly bit near the insertion needle. If so if you have sensitve skin make sure you put something under it. I use to cut out a piece of IV 3000 and use that some use gauze. I use to have then a 2 meter exstention and then you will need bungs to if you wnat to disconnect. If you are use to the sof sets you will find them a pain with all the extra bits. If you wants any spares, bungs lines I do have some I saved and can send a few.
Speedy
ta speedy - sounds similar, but blue plastic - probably different size needle, this one looks huge! I'v ebeen puting off doing it. If it doesn't do for me I will speak to prof re going back to sof sets, i think it is just the ward trying to save cash, but i'm the only one they get for so they can just go back to sofsets if they have to! I'll strop otherwise - sofsets are still cheaper than going back to the admission rate I had pre-subcut!
s
Not heard of them.... are they butterfly needles with a short line like they use to get blood sometimes??? Have had something similar in the past - the other thing that works quite well is Neoflons! the yellow paediatric venflons - just pop then in at 45 degrees into the s/c layer and add an extention line. They look a little vicious with the big needle etc but do last 2-3 days. Some makes are better than others for streamling - ie the bulkiness of the port etc.
I would speak to them and try to get them to get the sof-sets - works out cheaper in the end as they will last longer than a needle and are more comfy if you have been using s/c for a long time etc.
Will look at google for the BD thingy!
Hope you get carpark card sorted!
Take care
Kate
XXX
Owl
One thing i will say having use safety intima for a year I will never go back to them from sof sets mainly because I use to pool under the skin badly and with silhouettes it never happens.It isnt actually much more exspensive as in sofsets you get the whole unit dressing bungs etc. I worked it out and it is miminmal and definately cheaper than bed in costa.
The district nurses here are not happy suddenly as I am sure you are aware everyone is watching budgets more than ever in the nhs. Mine will now only do one months supply where they were doing three months all to do with budget.
is anyone using Thala sets ? Sean has had these as giving set for couple years and they are great. Is just a thought as some of the needles you are having to use sound on large side and the thala set is a small needle.
Well I'm not too impressed by these new things, and have been looking online for the options - I may email the sof-set company asn ask them to send samples to see which I get on best with - I'm sure someone said they had done that before. The thala ones look like the needle stays in, is that right Julie? I like the idea of a plastic cannula better, the sof-sets are like that. Silouettes look neat too, I know some of you have used them, so I will see if I can get a selection to try, then go negotiate with sister. But this one needs changed already, and usually I last a week or more with a sof-set. And it hurt all night and again lots today, unlike the sofsets which i never noticed being in.
anyone using anything other than sof-set/silouette/thala - and think they are any good?
Thala-set...... have just looked them up on the AMT web site.
I have used them in the past under the name of 'Contact' sets or 'Disetronic'
I had a few problems with them...
A - they hurt when you get a direct hit on the site and can bleed as they are like a drawing pin
B - I had a couple snap off !
they may have improved since .... ???
Owl, The silouettes are very good so are the Sof-sets too - But in the meantime try the neoflons! they are the closest you can get to a sillouette!
AMT will send you samples of everything they do and normally next day post if you do it early in the morning. They are listed in the NHS catalogue and they even know the catalogue numbers for the NHS catalogue if you ask them which makes it easy on the district nurses or where ever you get them from.
I find silhouettes best for me as you can disconnect easy and they have never pooled once on 12 mg. Also silohettes have cotton fabric which is good for sensitve skin. I had problems with softset normal pooling and with the others with yellow butterfly.
Without being rude it all depends on your fatty bits and how much there is as to how deep you need to go. Shilouetts you can vary depth soft set you cant.
What is on the packet of the yellow butterfly ones is BD SAF-T_Intima most wards use these in my hospital, they are similar to soft sets as they have a plastic bit left inside when you draw out the insertion needle.
Best of luck Owl its mainly trial and error then as usual convincing PCT to fund it
arghhhhh - having a nightmare with my needles - have had to resite 3 times today! Have GOT to persuade PCT to fund soft sets - am getting bruises on my tummy from the yellow needles. Was ok with the green that they used in the RBH but they didn't have any in pharmacy so got the yellow ones instead.
Sorry to moan - just finding it difficult and frustrating to have to keep resiting.
Rusty
Rusty,
It can be very trying in the beginning till you get use to it and everything is organised locally.
Keep persevering and try and think that it is worth it to feel better. Easier said than done. I screamed at my hubby when he said that to me in the beginning. I also dont mind admitting I found the whole concept of being attached to something 24/7 difficult to come to terms with unitl I felt and realised the benefits.
I think its about time we wrote a fact sheet between us for new users. Either for distribution by AUK or those at the Brompton do one for RBH to give out.
I get all my via the ward, and it is really daft - sof sets were fine and i think they have changed to save money. I'm off to find the amt number again!
Rusty, yes, it is really irritating, but keep trying cos the sofsets etc are much better.
s
AMT Medical for peeps info....
01223 420415
I have done a fact sheet on hints & Tips...
Shall I Post it again.... I did somewhere along the line - may do it on a separate thread as quite long!
Kate
XXX
PS have started a new thread under medical
S/C Hints & Tips Info......please add your tips!
Ta Kate, I have emailed them meantime - got no peace in the office to phone today, so will see how I get on. Scratch scratch meantime!
s
yes the thala set needle does stay in and i wrongly had assumed this is the case with them all. The rbh told us they were the best ones so i just took them at their word as at the time i had no one to compere notes with. They do hurt if they get direct hit and do bleed sometimes but i just assumed all this was normal ?
Well looks like there are more options open to Sean than thala sets so I may have to look into things. Thanks for all info
Just had really positive appt with gp. He is going to argue my case to the PCT for sof sets - and he is being really supportive. His words were he wants the best for me. So fingers crossed!
rusty
fabulous rusty - helps when your GP is on your side
Fantastic - I am so glad peeps can get sof-sets within weeks or months of being put on s/c.
I started s/c in 1994 and only got soft sets in 1998 (?) when they became more available in the UK!
4 years of butterfly needles! Eeeeek!
Kate
hi i got soft sets 17 weeks after first trying to get them they really didnt want me to have them and yesterday my uncle recived a letter to say his wife who is still in hossie after 12 weeks is not having funding for them anymore
Hi Spiderlungs,
argue the fact that it is cheaper to provide the sof sets than to treat you in hospital.
Welcome to the boards - how long have you been on s/c?
Kate
kate
i suppose i didnt write it well my brain thinkg faster than i type so it did not go down right i meant to mean that a letter arrived about funding my auntys subcut and soft sets and thant the softset mat have to be replaced my something else.her soft sets are funded by the prmiry health care team that is who its from i have been one sc for years now i hated it at first but am ok finding sites is becomeing a pain!! but when i tried with out when the doc reduced it to ween me off my asthma went nuts do you have brittle as well i am on soft sets but had to fight for them as had them before and did not like them but had them again when i was on the ward to trail them again and i loved them!
Hi Spiderlungs,
sorry, meant to say, Aunt & uncle can use that argument etc.
Sofsets are around £7 each I think and can last 5 or so days.
Yes, I have brittle asthma and use s/c ventolin as you need less of it than Bricanyl.
Although I think I am the only one here using ventolin instead of bricanyl.
I use a newer version of the sofsets called Sillouettes, they go in at 45 degree angle and you can disconect them at the site. Still use sofsets sometimes though esp in arms as can use the sof-serter to get them in.
Take care
Kate
Kate what is the sof-serter you speak of? I have deradful truoble getting sof-sets into arms and can't use tops of legs as after last round of IV hydro I have stretch marks for england all over the tops of my legs. I have 2 infected areas on my tummy atm so it is arms or arms unless anyone else can think of somewhere else to put the sof-sets.
Bex
Hi Bex,
the sof-serter is a natty gadget, bit like a very fat grey epipen that you load the sof-set into, press the button on top and it springs the sof-set into your skin, can be done one handed, hence useful for arms. Also useful for tough skin too!
There is also a sil-serter I think!!!
Not sure if AMT do them but MiniMed, the peeps who make the sets do them so check out their web site...... will post details here when found out sites!
Kate
Update
applied-medical.co.uk/sofse...
See bottom of web page....
code MMT - 300 if you want to order one
applied-medical.co.uk/silho...
near the bottom for the sil-serter - not tried one of these as find silluetes OK by hand
PPS regards arms - hold the sof-set with thumb & middle finger on the wings and indecx finger on the blue needle bit, use little finger to pull middle to top of arm ( the softer bit!) round towards you and then put the sof-set in. Make sure you get the softer / baggy bit and not the muscley bit cos that hurts!
AARRGGGHHHH - i hate butterfly needles - i have had to resite 3 times today because they been leaking!! I am sooooo fed up with them, thankfully i do seem to have stopped bruising quite so much.
I have been careful when siting to try and avoid stretch marks - am i doing something wrong for the needles to leak so much today - starting to lose confidence etc.
seeing gp tomorrow so going to mention it and see if we have an answer from the pct about sof sets.
rusty
When you put the butterfly needle in make sure the hole is face down, not face up. That might help. haven't had sub-cut myself but have used them with a lot of my patients.
Ange xx
Rusty did you get the sof-sets I sent? I would give them a try to give your skin a rest for while. Don't worry about the confidence thing I went through it too. Have you tried tops of your legs?
Bex
hi bex - no - parcel never arrived boo hoo. I hate royal mail. Have tried tops of my legs and they are really sore - can't tolerate the needle in there for more than a few hours. Am going to get the district nurse to put one in my arm today so that should give me 24hrs relief.
Rusty PM me your address and I will stick some more in the post (recorded deleivery this time).
Bex
im sorry to be a bore and ask for repeat info but ive been wading through pages of posts and can't find what i'm looking for.
Can someone please advise best dressing to use to cover s/c site please?
Sean been using opsite for ages but tonight he has re sited and his tummy looks a mess. He has rectangle raised red weals from opsite dressing with a circle red area in middle where thalaset has been., he normally changes site every 48 hrs but this had only been 24 hrs.For some reason his skin has become very sensitive as he also got some nasty bruising on arms and legs.
If anyone has any dressing suggestions id be grateful.
Julie
Julie we all use different. I have had a terrible time and now it seems I react to everything.
Before it flared up I used Iv 3000 that was my best but you can try tegeaderm and I know Kate has a good list.
If you could get him on sof sets they are better as the size of the dressing needed is so much smaller so you can move them around and give the skin chance to recover. The silhouette I am using has a cotton dressing so I think it is the adhesive I am reacting to.
Also ask your Gp to prescribe Cavilon spray, you can spray it on the skin before putting the dressing on and it puts on a barrier to prevent irritation. That was my saviour before sof sets.
Why not ring up AMT 01223 420415 and ask them to send you samples of sof sets and shiloettes they will no problem. They are only a small company and very helpful.
Caroline
Thanks Caroline, I'll go Gp in morning and get some cavilon and ring for samples. I think our problem is the adhesive , well thats the areas that are red raw anyway. If its not one thing it's another. I know its only a small blip in the bigger scheme of things but theres always something to be worrying about isnt there.
Hope things are ok with you
Julie
I have copied Kate's list from before to give you some suggestions - no doubt you will have tried some of them yourself.
s
The tapes I have tried are as follows:
(I am not recommending any because some are expensive - If you try this, do it in collaboration with your GP, District nurse, Asthma nurse, Consultant etc as your Health Authority/ Trust may use different types or brands)
- Micropore
- Durapore
- Transpore (now called Mepore)
- Mefix
- Hypafix
- Bio-occlusive
- OpSite
- Tegaderm
- Flexipore (a bit like Spiroflex, but still expensive)
- Duoderm (also expensive)
I think the heat is causing problems I am the tops of my arms for a while to give my tummy a rest, there is no doubt the adhesive that is the problem. I tried cutting circles in tagiderm and various other ones and they are all the same. I am hoping it approves when the weather gets cooler.
Bex
Wol, Thanks for hoiking the list back to the top ......
Julie, can't think of any more but do ask for some samples - they are very good at ATM and may even be avle to suggest some other tape.
Regards adhesive sensitivity, there is sometimes latex in it so may be worth checking this though I think most now is latex free.
Kate
Thank you all for advice, much appreciated
Thought this may be interesting
I have found the only tape I can use is something called scanpor. Dermatology dept use it for patch testing. I researched on the site and apparently this is why it is different
""Scanpor is a skin friendly surgical tape that contains no Colophony. (A well-known allergen that can cause dermatological reaction in colophony sensitive patients.) It is designed to be easier, and therefore less painful, to remove than other surgical tapes. Scanpor is non-woven and available in a wide variety of formats.""
bio-diagnostics.co.uk/derma...
Sanpopr comes in many widths and the company will send you samples to try but it isnt exspenive to buy over the counter.
Sharps Bins query
Ok, came up againsgt a prob on Friday when I tried to get a new sharps bin - my gps can only pescribe 1litre bins - which won't fit syringes through hole -
where do u guys get urs from and wot size do u normally get??
As it is I have to take my full bins back to my GPs for disposal. Nice GP nicked one out of their store cupboard for this time - but need to get this issue resolved - i have found a few companies that do sell them and they aren't overly expensive but don't want to go down that route unless i really have to.
Bex - thanks for sof set - i have used one so far and LOVE it - am going to go back to needles tomorrow and save the other for a week or so time. Going to be asking gp about whether he heard back from PCT yet - me thinks not as he not contacted me but maybe he will hassle them if i hassle him.
huggles
Rust y
Rusty
Sharps bin, I get mine collected by the county council refuse dept. I ring up when i need ti collecting and put it out the night before and the next morning there is a replacement. You could see if they do collection at the council or ask who collects gps. Also ask at local hospital.
I only use the sharps bin for needles and dont actually put in my syringes.
With regards to the sof sets if you do hit problems remind the PCT that the sof set actually gives you dressing and line as well as needle so is likely to work out cheaper than having the items seperately.
De ja Vue Sharps bins!
Hellooo!
I had a similar problem a couple of months ago.
Was prescribed the diddy 1 ltr jobs which will take 10 mls at a shove through the spikey bits..... used an aold Ecover clothes washing liquid bottle which will take 20 mls and stuffed it full, litterally! You can do this and hand it in. My Dist Nurse said the syringes could go in the donestic waste - Errrr , no - think binmen would have a fit if bag split and especially where I live!
The sharp bits did go in the sharps bin.
Now, I do get the big 5ltr yellow & white ones from 'Essex Equipment service - the same peeps who supply needles and syringes etc. I then return them to the GP pharmacy. I do get the diddy ones for holidays though!
Hope this helps too!
KAte
XXX
I have spoken to my local council - they will only do 6 monthly collections for sharps bins - not much use. I was also told by them and GP that syringes HAD to go into sharps bin in this area. They are really fussy on what items can go in what bins anyway here - heavily into recycling which is a good thing but can imagine binmens reaction if they found a syringe in the normal rubbish.
I am going to speak to my district nurse again when i order more supplies and see what she suggests, i am also going to speak to my local asthma nurse and see if i can get them directly from the hospital.
huggles rusty
I always knew Devon lived in the dark ages, one of the reasons we moved back. Perhaps in about 10 years we will catch up with the rest of the country ; )
We were given a 5L one for home and a little one for nights away and when full I just take back to Gp surgery and they swap for empty. I put empty syringes in with normal rubbish.Julie
We were given a 5L one for home and a little one for nights away and when full I just take back to Gp surgery and they swap for empty. I put empty syringes in with normal rubbish.Julie
I was told not to put syringes in the normal rubbish in case drugs users fished them out! I call my local council on tuesday and on wednesday a nice man comes and swaps mine over. No fuss no hassle. Frankly you have enough to put up with doing the whole sub cut thing to need to fight for sharps bins.
Bex
just shows it depends where you live - I get bins from the ward and return them there (or to work if I forget!), but I only use them for needles and vials - the syrynges I put in orange clin waste bags which also go back to the ward for disposal. So long as there is nothing sharp an orange bag should be ok and is cheaper to dispose of, so is worth asking if you could get a role of them - handy to have to take places too cos they take up less space.
must go up and get more syringes tomorrow though - the last time they hardly gave me any and I've been reusing them again - oops!
s
Hi Owl,
I will also ask about clinical waste bags too! We have yellow ones here!
Good idea as othewise it is more plastic that is incinerated - or are the yellow bags incinerated too???
Kate
sharps bins
hi,
as most of us spend time in costa have any of you tried asking resp ward. mine supplies my bin and wen full take bak to ward for replacement, much less hassle.
George x
Soft Set needles
well i thought that i had got a good result when i got the call from the district nurse on tuesday saying that they would supply soft set needles. I have picked them up today to find that what they are paying for and providing is IV catheters (basically a cannula!) they are BD Insyte-W ones.
My questions are
1 - can i use these for sub cut? - i can't find any information on the web
2 - do u put them in the same way as the butterfly needles - ie at a 45 degree angle?
3 - can they stay in longer than the butterfly needles?
BAH - y couldn't they just supply the soft set needles as i asked!!! i bet it comes down to money at the end of the day.
from a frustrated rusty
Sorry rusty hunny, isnt all our probs down to money!!!!!!!!! my distric nurses wouldnt supply but i was lucky thay lung centre supplied everything at clinic.
all i can say is all sub cuts go at a 45 degree angle, maybe worth getting back onto them and the RBH maybe they got the order numbers mixed up.
If desperate you can buy them but as your probably aware there expensive
good luck hunny
Love Andrea xxx
Hi Rusty.
I know which ones you mean - i have half a box too! They go in like butterflies - so 45degrees rather than 90 degrees like sofsets. They supposedly last longer than butterflies - I guess it depends how long your butterflies lasted. I couldn't get them to work for more than 24h, and even that was a challenge. My sofsets last 1-2 weeks. I eventually persuaded them (while sister was on holiday though) that sofsets worked out chesper cos they lasted longer.
Sorry they are a disappointment. If you try them and they don't last longer, you could always argue for real sof sets on the grounds that they would be cheaper in the long run.
I must get some more actually - so hope I can get somone to order the proper ones when sister is on days off!
Good luck
s
ARRRGGGGGGGGGGGGGGGGGGHHHHHHHHHHHH
Sorry this is going to be a moan - I AM SO FED UP with the stupid needles that the dns have got me. Am having to change them every day and now having to endure check ups by said dns because they think that I am not putting them in properly and/or changing them for the sake of it!!!!!!!!!!!
Showed the dn this morning how the bendy tube bit ends up when i take it out and she said that she had never seen it happen before! Well i can't believe that! I have just had 2nd visit of 3 from dn and although the needle has moved she said it is fine - so roll on tomorrow morning and I am praying that this needle is going to be leaking and be very bent so they can see that none of the above is true.
Sorry for moaning, but as i said i am really fed up with it all. If the sub cut didn't make so much difference to my lungs i would just go back to the rbh and say thanks but no thanks is too much hassle.
I have tried to explain that the cost of the soft sets would probably work out more cost effective in the long run but they are not having any of it. They reckon that as these needles work in their end of life patients who are immobile then they should work in me who is mobile.
rusty
Rusty
So sorry you having a rough time with DNs. If its any consolation so am I. I do know our DNs orginally told me the safety intama needles they used and I was given would last up to week. I felt so sorry for the patients who had no choice or not able to tell them it hurt.
My problem is I am oon sofsets but due to my skin problem I am having to use sometimes more than one a day on advice of cons from dermatology and the DNs are moaning like anything about the cost. I have told them to come and see the state of my skin and sites but thats too much trouble.
Rusty I would write a letter to the head of your PCT requesting funding for sofsets stating the rpoblems you are having, the horus it is costing the DNs coming out etc. remind them how much cost it is for a bed in costa for a night if the subcut isnt working correctly. When i did this over my pump the reply I got back was wonderful . It was a case of course you can have it whats all the fuss over.
Its worth a try and you got nothing to loose.
Hi Rusty,
sorry to hear yous Dist nurses are being a pain.
I agree wil all that Speedy says!
Also, they say that they use the same ones in paliative care and are OK.
They are used in immobile patients who are usually in great pain from other reasons and it is usually morphine they are having through it for a shorter time than we use for s/c ( sorry if that sounds harsh to paliative care) but s/c bronchodilators are to improve quality of life and as it is to help us lead a better quality of life whether that is enabling us to do the shopping in a shop & not on line or Abseiling for charity!
They need to take all this into consideration plus the impact of the steroids too.
Sof sets and their allies do last longer and are more gentle on the skin too. A Soft set lasting 5 days is probably the same or cheaper than the cheap hard needles.
Hope this provides some more ammunition for you.
Have you has samples from the sof- set peeps?
Good luck
Kate
XXX
Hi subcutters,
Don't know much about subcut for asthma (hmmmm... yet!) but have done some palliative care and have to say as everyone else has done that the use of the needles for palliative care is not really comparable.
Not only are palliative care patients less mobile and using it for a much shorter period of time, but if they are using it for morphine it is thought to have some local effect for pain as well (the hospice I worked in used to use morphine syrup for throat pain for this reason, for example) and so a morphine syringe driver will therefore be intrinsically less painful for this reason. Also often I have seen palliative care teams put a small amount of dexamethasone (steroid) into the driver too to reduce local inflammation and make sites last longer, which is practical for palliative care patients who are using it for a short time and are not worried about the long term effects of steroids, and indeed are often on steroids to improve appetite and quality of life anyway, but not so practical if you are on it long term and the object of being on it is partly to try and get the steroid dose down as much as possible anyway!
Basically the use of subcut medication and syringe drivers for palliative care patients is totally different and I don't think they should be generalising from them to bronchodilators for asthmatics!
I would definately go for the cost issue and cite the increased cost of changing needles every day, being in if subcut isn't working etc. PCTs are usually quite amenable to financial arguments; I have seen others get funding that way, eg for Xolair and, when I was working, for insulin pumps for diabetes, IV bisphosphonates and various other things that aren't routinely funded by PCTs.
Hope you have some luck
Take care
Em H
Hi Em,
Thanks for putting it in a more medical wording! I was thinking that morphine would help with the pain at the site etc but didn't want to have wild guesses.
I was worried about treading on a sensitive issue with paliative care.
Interesting about using Dexameth to stop the inflamation.
Just shows that the two uses are very different.
Thanks
Kate
xXx
The Saga continues.........
Still having NO luck with DNs - they have been every morning and evening so far this week. Tried a different way of putting needles in yesterday - supposed to be kink proof as dn put it - well only lasted 12 hours!!!! supposed to carry on doing it this way but i am going back to the way that i was putting them in - at least they lasted 24 hours!
showed dn the two bent needles this morning, she is off to talk to bosses about where to go next - i have a feeling it won't be down the soft set route because of the cost!!!!
I also mentioned that i was more mobile than their usual patients to be told that this shouldn't make any difference and that they have never seen a canula bend like this. Plus I was told the iv catheters that they are supplying are NO different from the soft sets!!!!! so why am i having soooo many probs with them when i had NO probs with keeping the soft sets in for 3 or more days. complete silence to that question.....
Anyway I am going to wait for their response to the latest rounds of talks and then I am going to talk to Debbie again tomorrow before i send off my 3 page letter to the PCT. I have put together what I feel is a logical and reasonable argument, have got a couple of people to check it to make sure I don't sound aggressive or like I am demanding something. don't want to put the PCT's back up....yet!
Off to sulk in my corner again............
rusty
Hi Rusty
Sorry your having a tough time with getting decent needles!
I have used the IV canulas but only in an emergency. They are really a bit thick and perhaps too long hence getting bent ( neoflons not toooo bad) . Plus they have a bulky port bit which does iritate. Try popping a bit of tape or gauze under the port bit to see if that tides you over.
Can your consultant help argue your corner too???
Anyway,
Pls take care
Love
Kate
XXX
Hi Rusty,
sorry to hear they are being so silly over this. Have you got costings for the BD ones and the sof-sets - maybe writing to DN team leader and PCT with the comparative costs would be useful - showing how often the cheap ones need changed etc.
I work in palliative care and we often have to use sof sets for our more mobile patients (contrary to popular belief we often have folk on syringe drivers who are not in the end stages of their illness, but who for one reason or another cannot have drugs by other routes). We see that the other types of infusion device do not last as long and are therefore less cost effective. In palliative care the patients often have the infusion made up daily by the DN, the line changed by DNs etc, so the DNs see the benefit to themselves.
The drug infused also makes a huge difference to how long the site and line will work for. Some of our drugs eg morphine are not irritant but others are, and need frequent changes of site whatever device you use. Terbutaline isn't particularly irritant so sites should last a reasonable time with a sof-set.
I have the info on the actual costs of sof-sets but not the bd intima ones, so if that is of any help just pm me.
I spent last night trying to persuade the ward nurse that finding me a new sof-set might give him less work, cos my site was really lumpy and inflammed, but he seemed to think I should just get by on nebs instead. Was very glad when the sensible team arrived this morning!
Best of luck Rusty
Sarah
Well i was a VERY norty rusty. Last Wednesday night my iv cannula thingy occluded while i was asleep so i woke up thursday morning very wheezy as I had a gp appt that morning i made the decision not to neb until i had seen the gp.
So in I crawl to gp wheezing like a trooper - she was NOT amused and took on the fight for me!!! to get proper soft sets.....and guess wot.....i had a message left on answer phone today from dns to say that i would be getting proper soft sets!
sometimes you have to play the system to get wot u want!! But at least I have eventually won the battle even if it was with a little cunning added in.
Thank you for all your advice and help
Rusty
well done Rusty, theres hope for us yet.
andrea xxx
patients rights win!!!!!
Go rusty! the end justifies the means i they say! glad you winning!
Well Done Rusty!
( will raise a glass of medicinal white wine to your success! however the means! LOL)
Kate
xXx
Hi!
I've had s/c for three years and am finding it more and more difficult to find sights. I started on 5 and now am on 10mg terbutaline a day and my tummy is incredibly lumpy. I find I'm having to change my site once a day and am finding it hard as they often tissue- leaving me less and less skin to use.
I cant use my arms as they only last a few hours and have been told not to use legs as am going to start another s/c drug which is incredibly thick and will have one in each leg once a week. I already use cream to lower bruising.
Does anyone have any ideas?
Thanx may x
Its immossible to due yourself but if you have someone else to site it for you have you tried your on your back just above your bum and hips where its abit more fleshey? i find they stay in there for days and dont tissue as much, i cant use my belly as lumpy and have to inject my insulin there 4 times a day. An other site but depends on your delivery device is ytour shoulder blade? sounds worse than it is but if you can get soomeone else to do it again it may be wprth a try, Basically anywhere with a bit of meat should be okay.
good luck
andrea xx
ps do you have any input for your district nurses? they should be able to advice you?
Hi May,
the other place that might be worth a try is your chest - NOT your boobs, but further up round about them, cos there is usually enough tisue there to work ok. Places you can't reach are a good idea to give your tummy time to settle down though - I am runnung out of tummy too, and it is a very big tummy, I thought it would be enough for ever!
May, wee sideline but what is the other S/C drug you going to try? Since I am now grudgingly wedded to my pump if there is someother effective drug out there that can be administered S/C I would be interested in knowing more.
Bex
owl tummy cant be as big and lumpy as mine!! love handles getting lumpy now too so this am have put it in my arm but am getting strange sensations in my shoulder and neck? like ive been near a draft? does anyone else recognise this symptom?
owl can you bee a bit more explicit of where on chest please am a bit desparete now?
thanks andrea xxx
Andrea, I also get a chilly feeling in arm - probably the drug going in and feeling cold.
Top of chest - around where you pin a brooch or mid way along just inside bra strap area. needls at 45 degrees best eg sillouetes but soft sets if well padded there are OK. Basically push boob up with inside wrist and pinch area above with finger & thumb! pop in needle!
Hope this helps
Kate
XXX
kate, just read your posting on siting above boob and was busy having a quick practise to see if your instructions were accurate and in walked 18 year old son. I am apparently going to be paying for another year of therapy now!
Bex
R
Thanks everyone I am getting desperate too, lumpy, bumpy and covered in ecxzema to so will try chest although struggling for big bit to grab but will try again with your method Kate. Which is best way to thread line down in your experiences?
LOL Bex!!!
( Quick nebb needed !!!)
Speedy - pop needle in downwards (Absorbs better and no gravity for the drug to drip out of.) then thread either back through strap and down to middle - stick a bit of tape on line just above, to avoid drag. Choose party frocks carefully or site away from posh frock line!
Or you can thread straight down the cleavage!
Am I really here discussing line aragements around boooobs???
Kate
LOL
XXX
*Lets out huge coughing wheeeeezes!!!*
Kate thanks for the advice and giggle at the same time. Will give it a go if I can stop laughing when im doing it.
Speedy X
Kate, fabulous not had much call for my ball frocks recently, but I will remember the advice next time I do. I did have to cut a wee sub cut hole in a frock the other day, brought a new bag to match and stuck my pump in there.
Bex
Oh Bex and Kate just when my chest had sttled down read your post and needed yet more nebs but feel so nuch better for the giggle!!! Bex me too was sat at comp reading Kates advice boob in one hand and in walked 15yr old nephew!! wanted know what i was doing? think he thought i was on some dirty site!!
Anyway am gonna try next time and thanks for advice Kate re siting pointing down, makes sense hey!!
so heres to more of us messing with boobs!! good job i have plenty to site with!!
love
Andrea xxx
Hi!
Thanx 4 ur expertise- I'll talk to my district nurse.
Bex- sorry to have mislead you its for my immune system (sandaglobulin) in the Brompton you can have IV immunoglobin every 4 weeks for asthma but I'm having once a week for my immune system.
Thanx again May x
May, Glad we can be of help to you!
No wonder my intercostal bits are splitting with all these Boob faux pas! LOL!
Kate
XXX
Not braved the boobies yet gonna get mum to help first time but need another option as mum back at work tom so am home alone so if tissues or comes out while shes at work a need a place i can do myself!!
Thnks to upped dose of sub cut have just managed to venture out to the pics with nephew ( get disabled card £5 for 3yrs and everytime you go your carer gets in free!) to see night at the museum absolutly fantastic!! highly recommended. But cramps dont like upped dose and neither does sugars!!
but hey its new year!
love andrea xxx
Am fed up with pump now!!!!!! got graseby ms 16ahrly one and it keep cutting out on me? i have changed the battery, changed te line and new giving set, when manually pumped is going through the line ok but as soon as put in the pump it alarms? havent heard from dns? phoned ward staff cant think of anything else said need a new pump!! am struggling at the mo. mum and dad at work so would have to get myself ready which in turn would bugger me up gat a taxi across town to go to the ward to collect? any ideas? willl i be ok just manually pushing a bit through every so oftento tide me over till mum gats home later?
oh poo!!!
andrea xxx
Andrea
I know you said you have changed the giving set but have you changed the syringe. When I had a graseby i went through a phase of the syringes sticking and the alarm kept going off.
Other than that no real other ideas. I know how frustrating it is.It happened to me to often that in the end i kept a spare pump at home as well as the one I was using.
Hope you get soted
Andrea
I always squidge the plunger in and out a couple of times before drawing it up to check it isn't sticking.
Yes you can manually push it through to tide you over but be carefull not to OD!
sometimes these pumps just go totally doo lally!
Hope you get pump sorted
Kate
Thanks Kate and Speedy, got new one, i tried changing the syringe, i think it was something to do with the motor as when took syrige out and press it it made a funny sound like it was sticking!!
What pumps do you use?
am looking into getting funding from a charity through my dad to get my own?
thanks
Andrea xxxx
I have a standard chrono from AMT.It is great and about size of a mobile phone. The only thing I woulld bear in mind is make sure pct will fund syringes etc for a different pump. I got mine through the pct due to other disabilities I have, so knew I could get the syringes etc without a problem. The pumps can be used for diabetes to so you might be worth looking into it from both angles.
This is the link
currently have s/c sited above right boob since Monday - very comfy too!
lasting well even though on Seat belt side plus I always carry my small rucksack ( Handbag!) on that side too!
Sillouetes seem to work well there - not tried one there for a long time but tum looking a bit manky!
Kate
Kate, Speedy, Bex or anyone else on sub cut, do you have breaks from it? if so whats your protocol? Robs is that you need a break every 5 weeks or longer when been on a while, he calls it a bricanyl holidy, it involes 5 days off pump covered by iv amino? his longterm pts do it at home, go to clininc get cannulated pick up a pump and stuff and do at home? newies like me or ones with probs go into hosp for it? Last time i was ok with it when went on chest ward but once went on oncology unit as only bed and got mrsa back on my chest and things went downhill rapidly from then, have just got rid hopefully!! well had oone clear sputum, so am worried bout going back in as you can imagine, so am trying to get it at home!!! mums a nurse, i was a nurse and friends are nurses live nearby so ? fingers crossed!!!
thanks
Andrea xxx
Andrea
I dont have breaks but then Im a little different as subcut is my equivalent to your steroids as I cant have them. The only thing I do tend to do is to manage on the mimimum possible so I can increase when needed.
I havent heard of anyone having breaks but then every cons is different in their reasoning for using subcut and how it best suits the patient.
May be it will help you not becoming reliant upon it and will certianly help the site problems you have.
I have to say if I was offered a break at home I would personally grab it with both hands at the moment as my skin is so bad and it needs a rest and dermatology were suggesting it last time I was there but it was a no go from reps team.
Best thing you can do is to talk to your cons and ask why etc and disscuss yor worries. It is very easy to become so reliant on the bricanly and need more and more and then need more treatment on top to control the attacks so in a way I can see why your cons is suggesting it.
Hello,
when I was on s/c full time for years 1995 - 1999/2000, I think, I ended up having ventolin IV on occasions at home but mainly due to my sites getting sooo bad and absorbtion down to zilch. I usually had it running at a rate of 20 - 30 mls / hr via a venflon and a CADD pump (A very small IV pump) - the only drawback was the hike back to the ward when the venflon went ( or 2-3 hrs in A&E in Stockport once!)
I used it for 5 - 10 days then back onto the s/c.
I drew it all up at home with hardly any problems apart from the odd burst bag where I stuck the needle into the IV bag at a funny angle! 500 or even 250ml bags are best. Clean area & hands plus a pair of clean cheap plyers for when the line gets stuck on the venflon! LOL! All is then loaded in a Bum bag - it is a closed system so doesn't need to have the bag on a pole. (Helps to get the air out the bag with a syringe etc so any air in the line doesn't alarm the system)
This didn't give me a break from the ventolin ( or Bricanyl) though and I was weened off it alltogether in 1999/2000. due to tollerance on ventolin - even at 60mls IV . My Hossie wasn't into using Aminophylin much then but it is now.
I was told though I could use it as back up at home but only for short periods. ( ho Hum ... failed there recently! But managing day time without!)
Hadn't thought about replacing with IV ammo in the past. Good idea as then body may not become tollerant of the Bricanyl.
If you do go down that route on a regular basis you could consider a portacath or a PASSport device to avoid those venflon failures especially if you have crap veins. (Some last quite a time and are used by CF pats alot)
My current protocol is to use s/c up to 5 days at home (or off to costa if no improvement ... ha ha ha!) then stop for a day or so or longer. Since July last year I have had perhaps 2-3 breaks of a few days off the s/c but My cons did recomend using it til the new year if needed to get through X-mas.
I have reorganised my Emergency section of my Protocol so IV Ammino is listed next after IV Mag so If I have been on the s/c, the ammo will kick in nicely!
Hope this helps
Kate
RBH don't do breaks. The terbutaline seems to be just as effective now as it was when I was 1st put on it.
Bex
Thanks pump chicks!!
my cons rational is that you build up a tolerence to it so it isnt as effective, i had a real prob with my first break last year after five weeks and cons siad its because it was too soon and i hadnt buiklt up a tolerence. Im quite lucky that if i was cannulas both me and mum are trained only i couldbt do to myself but mums a chemo nurse and does it everyday. I am on the waiting kist for a port although after reading about rach c im more worried than ever!!!
Feel like im becoming a bit tolerent highest was on before was 6mgs and a few times had to lower because of palps and cramps, now been on 7.5mgs with mot as much side effects but last few days can feel its not quite as effective and getting muscle weekness.
oh well at least im at home still!!!!
love Andrea xxx
Hi,
I used s/c more or less continuously for 4 years, for ever increasing the doses at times - I was on 10mg / 20 mls of Bricanyl within months of starting s/c. Occasionally went up to 15mg / 30 mls of bric!
Then onto s/c ventolin of up to 15mg / 15mls. I found the s/c effective for a couple of years thinking about it but then had years of frequent admissions.
Its a dificult one as people absorb and their body utilises it differently. I have a friend who has been on s/c for , must be 20 years.
My Cons is quite forward thinking and picks up on what Heartlands and the RBH do. He was trialing elimination diets a few years ago ( A Heartlands idea) - never did those ones. Plus friends who did do it are eating some of the foods now anyway!
Also, I swapped to Ventolin because of the volume problems with 20mls of Bric a day and also one of the benefits is less cramps in silly places - eg in the back of the legs while kneeling in the back of an ambulance treating a casualty! We were all laughing by the end!
Kate
XXX
Thanks Kate, unfortunatley im allergic to salbutamol!! so iv or sub cut ventolin not an option as react even to inhaled
Spoke to asthma nurse today as GP rang and wont prescribe any of the sundries!! so shes gonna give me softsets and order 30ml syringes for me as have have had to but my own!!! cant provide pump as not got any but local are happy tp use their and asthma nurse putting in bid to pct!! yeah right!! been waiting fir district nurses to contact since last year!!
Asked asthma nurse about muscle pain and weekness she said could be just coz of dose could be getting ready for a break but as spent so much time in hosp and chest steady prob leave till get acute which i hope is a while off!!
love Andrea xxx
Hi Andrea - you can get 30 mls or 15mg bric to run over 24 hrs by loading 15mls (7.5mg bric) in a 20mls syringe to run over 12 hrs twice a day.
Use an MS26 24hr which runs with mm over 24 hrs, measure the dose then double it - though I think it runs a little slower as it only goes up to 99mm!
Perhaps the other pumps such as the mm per hour will run faster...
Just a thought
Kate
The mm per hour pumps will pump faster, yes, they can go up to 99mm per hour!
(Personally, the thought of 99mm per hour makes me wince...!)
Grrrrr after I discovered today I could do with Sub cut my cons phones me back after clinic and breaks it to me gently I can't have it due to no long term fixtures in my area, for example a specialist team. Its ok as a short term thing but not long term. Everyone on sub cut long term in my area has to go to the regional centre, which for me isn't an option after I had a pretty big 'disagreement' with a Dr there and sods law would have it that hes the one at this regional centre that has to prescribe it and oversee it! Great! My cons is trying to get round it but in the mean time I have to go in and have IV Sal for a few days, just waiting for a bed Grrrrrr.
Tks xxx
Thanks Kate i was doing that but as alot of fluid was getting sore lumps daily? its ok now asthma nurse has ordered me some 30ml syringes, and got me a box of soft sets. my pumps the ms 16a hrly one thats banned in most hosp!!!
Thanks
Andrea xx
Andrea, why do you want 30ml syringes. I used 20ml when my dose was upped but I thought you said you were on 7.5 which I run in a 10ml syringe I change twice a day. I am worried about you upping the dose without checking first, terbutaline can cause flooding of the receptors and if you need to go in other drugs might not work as well. Please be careful, I would not dream of altering my dose without the say so of the RBH and actually hated it when they upped it as it changes the way your asthma behaves and you might not recognise attack warning signs.
Bex
Dont worry Bex wouldnt do it without Robs say so and he said no, said gonna need admission soon but knows am dead against it at the mo!! stubborn. They dont like you changing every 12hrs as the volume of fluid is higher and was causing skin to react quicker?
Thanks for advice about attacks i hadnt noticed that before but looking back does tie in!!
Andrea
I have the rbh protocol infront of me for s/c as sean just been increased again. For 7.5 mg it is 10 mls in 10 ml syringe changed 12 hourly, running at 90mm on a ms26. I have never heard of not changing 12 hrly due to skin reacting? It just shows how different medical teams do things there own way doesnt it. Rbh have told me I can adjust doses as Seans medical need dictates but I wont be as he too unstable at the moment, I have noticed a definate change in the way he has attacks since his dose was increase several months ago.
Julie
Hello everyone,
I'm quite interested in this business of subcut changing the way your attacks develop - I'm still thinking about subcut (going to RBH to discuss it on the 24th) and I already have very sudden onset attacks. I'm quite worried about the safety aspect of it if having subcut made them any more sudden onset! When I'm on my own in the house it can be a problem already calling the paras, letting them in etc.
Has anyone got any advice/experiences to share with me? Is it something that you adapt to with time and get to know your new warning signs? Am I just worrying about nothing? (I am good at that!)
Thanks in advance
Em
The problem that I personally found with subcut is that although it does help is that it can easily mask how bad things are so that by the time a bad attack comes you are worse than you know. This has meant I have jsut had to be more aware of symptoms and therefore perhaps seek help earlier than i would of pre subcut in order to be safe.
I know when I went in last year it was more due to being symptomatic rather than an attack as cons decided to up the dose and see how I managed, when they did blood gases etc they were bad and yet I was sat they saying Im fine.
The techinicle side of it has been explained I think on here at some point Emily.
Yep Julie because i have to injsct insulin 4 times daily into abdo its alredy a bit lumpy so changing 12hrly ment 27mls fluid a day through my pump but with a 30mls syringe daily its only 18mls whitch can cope with and sites last longer?
Dont know if its their actual protocol or just with me because of the way my skin is?
Andrea xx
Andrea are you diluting the bricanyl. Cos you don't have cos to on 7.5mg you should be getting 15mls of fluid going in over 24 hours. If you are not dilutingsomeone has done their maths wrong and you are getting way way more than 7.5mg
Bex
*confused*
(Granted, I am at the end of a very long day and dear old Aunty Flo is not helping clarity of thought)
I'm a bit befuddled at how reducing the frequency of changing your syringe would reduce your total volume that you're receiving. Unless you've got a higher strength of bricanyl. Or changing the rate. I'm probably being incredibly thick - it's definitely possible...
*wanders off muttering to herself*
Hello Fellow confuddled!
Cathbear - regards 99mm, I was talking about 99mm over 24 hrs not 1hr! (I think we would go bang!)
Frequent changing of syringes should not alter the volume - the ony reason for using more than one syringe in 24hrs is if you are using more than 17.5ml of total fluid (8.75mg or 17.5mls of neat Bricanyl or 17.5mg/ml of neat ventolin)
or you are diluting it.
There is or was a grey 12hr Graseby syring driver which used 10ml BD syringes and was pre programmed to run 10ml over 12 hrs - you couldn't change the rate or use a different volume or lenght syringe - caused me a problem once when a nurse stuck a 20ml syring in with 10 mls in - It went through way too fast. ( I did try to tell her LOL!)
I have never diluted it as I have found the larger the volume the more irritation, pooling. tissuing etc.
Andrea - What sort of pump are you using? Is it a Graseby?
I know the Crono PID thingy ones have their own syringes which can be up to 30 mls.
To run an MS 26 graseby over 12 hrs you measure the amount in mm the double it. run at that rate.
To run 30 mls though ( which is a lot!! - done it twice to avoid costa - never again - equivalent to runing IV at 60mls pr hr! top whack)
you can use the 12 hr method or drawing up 15mls in a 20ml syringe - measuring the volume, 15mls in mm then doubling and running at that rate.
Whether you are changing every 12 or 24 hrs the volume should be the same - the only reason to change every 12 hrs is if you are on a prescribed higher volume such as more than 17.5mls ( this is the most you can stuff through in one syringe in 24 hrs .... unless you use 30 mls - i assume they fit in the driver?)
Regards loss of early warning of deterioration - Yes, It can mask deterioration - I have had some real humdingers where I would usually see them comming.
Since only using it as & when now, my pattern has changed - type one with type two accute!
TKS - my s/c was set up by my local - no regional centre involved - just have a bold Consultant - no real back up - the district nurse popped in once to see if I had everything - all med supplies from central equip service - If I need something new, I ask them or ask a Distric nurse who I have never met / seen! LOL! Perhaps they are more strick on these things now. I started s/c in 1995
Hope all this helps a weeeeee bit!
Kate
XXX
Disclaimer - this is just info to explain the befuddlement! Don't alter any s/c rates etc without drs say so!
ok i am now very very confused but i must admit I cant get straight answer out docs about it either. Sean is on 10mg over 24 hrs, rbh protocol is draw up 10ml in 20ml syringe and run at 70mm on ms26and change 12 hrly. I have asked why we cant run 20ml over 24 hrs as dose of drug is the same but i was told its not protocol. Im sure there must be a reason but I cant see logic, mayb thats why im not a doc lol.
no i dont have the whole 30mls!!
i use the graseby ms16a hourly pump, using a 20ml syringe 48mm therefore 0.2mm an hour is 13 1/2mls fluid, 7.5mgs is 15mls fluid so would have to go up to 60mm at 0.3mls an hour but thats 17 1/2 mls fluid and the 20ml syringe wont pull bacj that far in this pump, but a 30ml syringe is fatter and 48mm is 18mls so have 15mls bricanyl and 3mls of saline over 24hrs? its easy for me to understand as i have it in front of me. ive never tried a 10ml syringe to see what the mm is and see if can do that 12hrly with less fluid? but at mo am ok with the 30ml syringes just a bit bulkier?
love andrea xx
I think im going to stick to following the print out ive been given and not question it or even try and work it out as now my tired brain is tied in knots with mm and ml and mg
Andrea the people here use the hourly pump you do and they use 10ml syringes they have a rate of 0.4mm per hour which gives roughly 8mg over 24 hours and you use only 16mls of fluid. You will need to change syringe ever 12 hours though.
Bex
Dont wory Julie it still confuses me and i nursed for many yaers and mum who deals with it at work now, so god help the non mediacally trained.
Thanks Bex like i said i hadnt tried a 10ml syringe so next time go clinic will try. Thank you
Andrea xxxx
*nearly passes out with brain strain*
Blerghhhh......um as an example, I don't know if this helps at all....my friend is on 12mg (ie 24mls) over 24 hours, uses and ""hourly"" syringe driver, 10ml syringes and changes three times a day approximately (she draws up 10mls and then runs it at (I think) 6mm per hour - so that of course lasts 10 hours....so she ends up changing slightly less that three times a day, but you get the idea).
I need a lie down. Why on earth do syringe drivers have to run in MM, for pete's sake?!?!?
now cath, i'm sure it's not pete's fault really ;oP
Oh goodness.
Clearly cannot have subcut terbutaline as brain is not nearly clever enough to understand all of that. And I've done palliative care, I thought I knew how syringe drivers worked.
Can't imagine trying to work it out when one is feeling a bit poorly!
Yep but Em i bet you just prescribed them dadnt you, and it was the nurses that set them up so dont beat yourself up hunny.
I agree someone should yell pump makers make all syringes same width so are all the same and pumps run in mls!!
Andrea xx
EmH don't panic RBH use different machines and alter your dose without it being part of your protocol at your peril! If you do alter it they give you syringe size and run rate and you stick that like glue.
Agree about the mls per hour thing. It confuses the hell out of ITU who seem to want to chart the .whatever it is of ml you get an hour for their fluid charts. I am always too unwell to say ""forget it that much is hardly going to make a difference in the grand scheme of things"" but have listened to some very odd conversations about how to work out much it is on hand overs!
Bex
Helloo!
Sorry we are all befuddled!
Julie - have messaged you the logic of why they use 10ml syringes.
For the others, you can't stuff a fully loaded 20ml syringe into a graseby! ( one nurse tried it with tape once despite my protestations!! LOL)
Emily - don't worry about it until you get it! Just write everything down with pictures.
I have a back of an IV ventolin pack in with my syringe driver detailing all the ammounts and the rates they run at etc so if squashed by a bus they a) know whats in it and b) the rate it is running at.
Cathbear - I have never used a mm per hr pump so not really up to doses.
I assume if you want to run 10 mls in 24 hrs you measure the 10mls in mm and divide by 24. Bit of a fangle I think - perhaps those pumps were designed for other medication that had to go in at a set rate but only over a few hours etc.
eg stuff for thalassemia.
3 syringes in one day is a bit much though! If you forget, you don't always here the beep when the driver has finnished. I used to miss it sometimes on the 12 hr regimes - not good an hour or so later....
Andrea, now I understand your logic behind the 30 mls - you can get more than 17 mls in them and run the whole lot in one syringe in 24 hrs.
Anyway,
Anyone still confuddled out there?
Kate
Have to confess when I was prescribing syringe drivers they were the huge heffing things that are mains powered. They conveniently ran in mls per hour (perhaps so as not to break the doctors' brains).
I was always amazed at how the nurses used to convert my prescriptions for a litre of fluid IV over so many hours into so-and-so many drops per minute.
Do nurses have a special chip, or gene, do you think??
Ooops, getting slightly off topic. Do carry on.
Agree, Cathy, that nurses seem to have a special extra bit of their brains for working out such things... I often used to hear them muttering an incomprehensible little chant... 'what you want over what you've got times what it's in'... or something like that?
So glad I only had to prescribe the stuff.
So true Em thats one time i can say the docs had it easier than us nurses?
andrea xxxx
I am strictly ""no-commenting"" to that one, Andrea...no fisticuffs in the sluice 
ok, we all seem to be getting tangled. it is really quite simple.
1. how much drug are you on - eg 7.5mg
2. what volume is it in - that would be 15ml
3. what syringe are you using (I use 20mls, but some have other ones)
4. draw up right amount of drug in syringe. take ruler, measure syringe from the end to where the drug comes to - mine is 56mm
5. set syringe driver to run at that rate over 24h (if green ms26 pump) or divide the number by 24 to run at that rate hourly (blue hourly ones).
so if you have a different size syringe but the same amount of drug, all you need is a ruler to work out what rate to run it at.
if you have a different amount of drug, again, just measure the length of the liquid in the syringe, and set the rate at that.
if you have too big a volume to fit in the syringe, then put half the volume for the day in, and measure. Multiple the mm by 2 (because you want twice that volume in over the day) and you have the 24 hourly rate. You change the syringe every 12h.
hope that helps - I work in palliative care and often we make up the drivers with the nurses cos we are less busy than them.
re diluting drugs - some drugs are quite irritant neat, and have to be diluted, bricanyl is usually ok. increased volume doesn't usually cause a problem, so if the sites are getting difficult, diluting with water for injection or saline can help.
drip rates - most fluid prescription charts have the drip rates per min, and ml/h rate on them somewhere
re attacks getting worse/ suddener - mine have since starting subcut. Prof Ayres says this is common cos although you feel not quite right the pf doesn't drop until later, and you have to look out for more subtle signs that things are getting worse. He always says to go in earlier than I would have because when I start to splat i do it quicker - it is possible to recognise that i am sliding but often hard to convince others, cos it is so non-specific!
That doesnt work on the hrly pump? 56mm divided by 24 is 2.3 but you can only do whole which is why you make it up, 24mm at.1mm/hr, 48mm at 2mm/hr and 60mm at 3mm/hr?. welll thats how mine works anyway like i said everyones different and i know how mines worked out and aslong as i get 7.5mgs/24 then thats ok and i do.
Andrea xxx
Ps didnt intend to start fisticuffs cath was trying to sound supportive it obviously didnt come out right sorry
Thanks, Owl, that does sound familiar... I remember now from when I was doing palliative care. I did learn it all as like you say it was often easier for me to do it than the nurses, or at least to be the person checking it. Also when working in hospitals rather than the hospice the nurses sometimes didn't know how to use syringe drivers and I always took the view that there was no point knowing what drugs to prescribe if I couldn't physically start it! That's why I was a little ashamed to find that I'd forgotten most of it - oh, well, I suppose it was nearly 4 years ago!
I do worry about this thing of attacks getting more sudden - my last three or four bad attacks came on within 15 - 30 minutes, albeit on a background of having been fairly grotty for a while, so I don't really need them to be any more sudden than they already are! I'm concerned about the safety aspect of getting to the hospital in time really... I guess I would get to know the more subtle signs in time.
I know what you mean, Owl, about trying to persuade others of the fact that you are deteriorating despite a lack of objective evidence. When I was admitted in November I went in earlier than I would have done otherwise, and unusually for me I was able to talk and able to do a peak flow. I clearly needed something extra because it was needing virtually b-2-b nebs to keep me that way, but it was very hard to persuade them to start IV aminophylline! Thankfully the A&E reg who was on knew me well, so I was able to win him over to my way of thinking!
Oh well, I suppose if it comes to it I'll get my head round all these things, I just can't stop myself mulling it all over in my mind, I am Queen of worrying about things that haven't happened yet!
Thanks all
Em
PS Andrea I'm sure Cath knew you weren't trying to start a fight, she was jsut joshing with you!
Sorry, seem to be saying that alot lately!! blame the lack of sleep, pred head aand worry head!1
andrea xxx
Indeedy, just joshing! Even smilies don't come over properly sometimes, heheh!
I knew I should have spent more time in palliative care. Thanks Owl!
Owl, thanks for getting down to basics!
Hoots!
Emily, It is a difficult one with sudden attacks or lack of early symptoms.
I think some of the time we just accept a few more or worsening symptoms and get on with things not always realising that they signify our asthma deteriorating.
With symptoms that we live with all the time we get used to and tollerate to some extent so we don't notice that we are about to have a humdinger. ( Does that make sence? ) Asthma changes its pattern and sometimes I think this is due to all the meds we take - some can mask early symptoms as well.
Sometimes we know we are about to go off big time ( a super humdinger!) but seem OK ish... like sliding towards a cliff edge and clinging on til we loose a grip completely. You get that distinct feeling.
So, that is why I call it chaotic asthma!
I am so gratefull for my protocol - I have lots of coppies so when one doc disapears with it as soon as the next doc comes along without it I can shove one in their hand. Occasionally they think they know best then half an hour later they are shoving everything in me! because they haven't taken note.
Please don't worry toooo much Em!
Kate
XXX
Thank you very much Kate, I am trying not to worry about it too much but not worrying is something that does not exactly come naturally to me! I have been changing my mind about whether to try subcut roughly every five minutes and have now resolved not to think about it any more until I go to RBH on Wednesday. Hmmm we'll see how long it takes me to break that resolution!
Frankly at the moment though I would try almost anything to get my life back so I suspect I'll end up giving it a go.
I know what you mean about that sliding off a cliff edge feeling... sometimes I will be not too bad, peak flows okay and everything and yet I just know I am building up to a big one. It's like a sort of internal twitchiness. Most frustrating because sometimes there doesn't seem to be a great deal you can do to prevent it happening. I guess I'll get used to those new signs on subcut and will just have to be ultracautious for a while!
Thanks again
Em xx
Hi, I'm waiting for a date to go into RBH for a sub-cut trial. I haven't let myself think about this too much, but I guess I ought to.
1. I can't find any basic information about what I'm in for. Can anyone help?
2. Are there any questions you would advise me to ask when I go in for the trial?
3. And most importantly, this is a bit embarrassing but I've been stressing about what type of trousers & underwear is best to fit the pump comfortably around or over my steroid belly - Bridget Jones or low cut boxers?!
Sheep, for the sub cut trial involved sometimes being on the drug and sometimes on the placebo and you have no idea which one. It sort of messes with your head space a bit cos you try to 2nd guess. For me it my biggest worry was being on the drug and it not working everytime I got symptoms I thought please let this be placebo and not the real deal. Expect to be doing laods of PF's and spiros cos they need to see cinical data on if it is working.
Can't remember needing to ask any questions I think I just tried to go with the flow (I am such a medication control freak it was tough) but it was deffo worth it.
They use your arms for sub cut trail so don't worry about knickers etc after if it goes OK and you stay on it then not skin tight up to the waist trousers but you can position the needle away from a waistband so don't get too worried.
Bex
Hi Sheep,
I never did a trial or been to RBH, was and am looked after by my lovely local consultant so I can't advise there.
Knickers - if you do however have it sited in your tum, I prefer knickers with a lower waist band - neat short things are OK (M&S low cut shorts or bikinis have low waist bands but cover everthing below and around! )
Hipster trousers OK too as long as you have nice top to cover tum and you site the needle up a wee bit.
Anyway, Good luck with the trial.
Kate
xXx
Hi Sheep,
I don't go to RbH so had a different trial (i was allowed to escape sometimes!)
As for clothes, just about anything that isn't an all in one is ok I find - I prefer to have reasonably big pants which come to above where the site is cos it seems to hold the thing in position better, and at first used bum bags always to carry the pump, now only if I have no pockets - I am more laid back about people seeing it I think. I wear baggy tops so that they cover the bum bag if I am feeling self conscious.
Hope you get on ok - feel free to ask anything else that you want to know - nothing is taboo here (see bit on boobs!)
Sarah
Wow, thanks for your replies people! I really, really appreciate it. It's a real comfort. And what a relief to smile about something I've been stressed about when I read all your replies!
So hopefully, I will expect my arms & not tummy to be injected at RBH on the trial, so the underwear isn't an issue for now - but I'll be prepared, and to do loads of PF's & spiros. It sounds like I'll be on a similar thing Bex; they mentioned a trial of no drug & then 2 different doses; a ""double blind"" trial, so that nobody knows what I'll be on 'til after. I don't fancy the lack of control either, and see how it would mess with your head - but I understand why it's a good idea. I've been trying to ""trick myself"" into doing better PF's to no avail for years by saying things to myself like ""imagine you've just had a neb, now try blowing harder"" & I've even nebulised distilled water (don't try this one at home...!) so I will probably be going through the same ""I really hope this is the Placebo"" one when my PFs are rubbish. Thanks so much again everyone. If I end up with it, I'll probably be posting with a lot more questions. Sleep well, pred & asthma permitting.....
*Bump* for Olive....
sorry got another question,
i am using butterfly needles just now for subcut but find the get itchy. it is n ot the dressing whihc i am using as it feels liek it is under the skin where the needle is that itchs. i dont know that much about sub cut etc but would different types of sets still produce itchsing as it is still a needle???
olive
Hello Olive,
different types of giving sets / needles may help. There are quite a few around - one of the best being Sof-Sets & Sillouettes by Medtronic . They have inbuilt sticky stuf.
Have you tried different tapes or even popping on a piece of tape that your skin is OK with on the skin first ( with a wee hole in it) and popping the butterfly through the hole so the wings don't come into direct contact with the skin.
Ask your nurse or suplier about different needles available.
Iff you scroll back through this thread there is some usefull info there!
Anymore queries please ask!
Take care
Kate
PS got a huge lump from one of my needles - yuck! Moral of the story - change sites when red! Ooops!
Olive are they old type where needle is left under skin or new where leaves a cannula? i react to metal need;e ones but like kate said sillohettes or soft sets are fab.
Andrea xx
Had some really good news last week about Sean's S/c....
Rbh have secured funding and bought a chrono pump for Sean and the PCt have agreed without a fight to supply the new syringes and sof sets or silloettes whichever he prefers
I'm so pleased as he going seconadary sch in sept and the graesby isnt exactly discreet! The new pump will just fit in a phone case and hook onto belt or inside blazer pocket.
As Rbh peads use thalasets (needle stays in) I had never seen Sof sets, now I have im amazed Sean has tolerated thalsets for sooo long. Will be much safer having sof sets at school during the barging and shoving that goes on in corriders between lessons .
Julie, that is fantastic news! I used something similar to thala sets years ago and they did bruise or even snap off.
I asked about a Chrono but got a nervous laugh from the equip library at the hossie - our NHS trust is £8 million in Debt!
Wish Sean good luck in September & hope he enjoys KAH this Year!
Kate
xXx
Hi,
Kate and Andrea thank you for your respoense. I use bioclusive dressing and they are fine unless it is really hot then i have found they get uncomfortable. the butterflies i use the needle does get left in. i have spoken to my dr and he said it is probably a reaction to the needle as i get a skin reaction to watch es and bracelets etc whihc are made oof metals. am going to keep with them till i go back down south to university as that is where my main cionsultant and gp are because he said we will need to apply again for funding to get different set that dont leave a needle. he mentioned ones that go in 90 degrees sounds a bit scary not sure of the name though. have two weeks more up in scotland before i go south so just ahve to keep chaing the butterfly each day till then. tahnk you for help.
olive
Olive, the 90 degree ones sound like the sof-sets. Actually they are not half as bad as you think or it sounds. As with standard butterflies the worst bit is peircing the skin once you have done that it is piece of cake cos you don't need to worry about angles or it being too shallow or too deep you just stick it in!
On a related note I am having problems again soreness, redness and tracking after about 24 hours which I am tolerating for a further 12-24 hours but whatever I am using (I have sof-sets and sillohettes) but I can see the PCT squeaking at me asking another box of both and the supportive asthma nurse down here has left. I tried a needle the other night in desperation but that was worse only stood about 6 hours Anyone got any ideas I am absolutly teriffied I am re-acting to the bricanyl and the thought of going back to the pre-sub cut days is one I can't bear to contemplate.
Bex
Hi Olive
As you can see I escaped costa! Had to use butterflies in costa dn my skin also reacted with metal needle. Trust me I am the most terrified person when it comes to needles. The trick with sof sets is to push them in as quick as possible so not to damage the little plastic bit that gets left in. You can then pull needle out and it looks like a drawing pin. If it helps (it does me) you can use a sof serter, this is a blue plastic thing which you press and it fires sof set. Sounds nasty but is so much easier and quicker in my opinion and the only way I can insert needle.
Love steph xx
Hi Bex, not sure why you are having all the problems, but I use a lot of syringe drivers at work, and sometimes our patients have similar problems, so some suggestions:
have you tried diluting the terbutaline? Sometimes we find that drugs which are irritant are better if they are diluted - more volume to go in but less reaction. Might be worth a try - usually we use water for injection to dilute.
On the other hand, some people do better with smaller volumes. I know Kate uses subcut salbutamol for that reason - it is more concentrated. You could ask about trying it.
The other thing that just might be happening is that you are introducing infection as you insert the needle. I have occasionally seen that happen - make sure you thoroughly clean the area, preferably with alco-wipe, and that hands are super clean. This is probably the least likely, but I have run into problems at camp and I suspect that is why - skin has always got some bugs on it, and by sticking a needle through it you can push them through the skin.
Will ask our nurses for any other suggestions today (if I have any brain) and post any other suggestions.
S
Hi Bex,
Not on subcut as you know but a few things occur:
I know that when I was doing Palliative Medicine we would have occasional patients that would run into problems with irritation from the syringe drivers (usually with cyclizine) and it was very much improved by adding a tiny amount of dexamethasone (about 2mg if memory serves) into the mix. I'm not sure if it is compatible with terbutaline though.
I think I also remember Prof Ayres saying years ago that some people find the Bricanyl nebuliser solution given subcut (diluted) easier to tolerate than the solution that is designed for parenteral use. Something to do with the different preservatives used in it?
I know some people do develop sensitivity to terbutaline and find that they are fine with salbutamol - Kate could probably tell you more?
As you probably know, some places also bring people in for 'terbutaline breaks' when they give them IV amino/salbutamol instead - not sure if this is to reduce reactions to terbutaline or to try to reduce the risk of developing tolerance to it - maybe someone who is at a centre where they do this could enlighten us? Andrea? I believe, though, that the two biggest (in my opinion!) authorities on subcut, RBH and Prof Ayres, don't seem to think it's necessary to do this, so I'm not sure about this one.
Also, once when I was an inpatient at Heartlands there was a patient who was in for insertion of a port so that she could have her terbutaline via that, as she was failing to tolerate it subcut any more. So there are other options, although obviously ports are not without problems, especially if you are accessing them frequently.
Anyway hope some of this is vaguely useful!
Love Em
Hellooo!
regards volume issues - I do use ventolin because it is neat and I need less volume.
Larger volume caused pooling under the skin and less absorbtion too.
A few people do have ports put in as a last resort as their skin has lost its ability to absorb or they need huge volumes of the stuff.
I used to have breaks from s/c and use a CADD pump via a venflon but only when my sites where totally knackered.( eg brusies & lumps everywhere)
This doesn't give you a ventolin break though unless you have aminophylline - not sure if this can be given at home - the CADD was a home pump so avoided a hossie stay.
I try to stop s/c when I am well now to reduce tollerance.
Bex - you could ask for ventolin? less volume too.
not sure what else to suggest apart from pre-taping the site with a skin friendly tape then popping the needle through a hole - if the sofset tape is causing an issue.
Em - adding Dexameth is probably OK in the short term eg paliative care but long term s/c I would imagine it would thin and weaken the skin like too much topical ( oral) steroid would??
Kate
Thank you folks for the replies. I think I am going to have to add it to the list for discussion with the RBH unless things get better soon. I don't think it is a volume issue as I sometimes have a higher dose and I don't get more problems then. Yes I admit I am not as good at the super hygine thing when swapping sets however I have had an infected site and it is not like that at all. Will talk to GP about water for injections and see if that helps.
Bex
Kate, I must admit that I had not considered that subcut for us lot is being used long term rather than short term for my palliative care patients - but I'm not convinced it would be that much of a problem. It is a really tiny dose, and it is going subcutaneously rather than directly onto the skin, so probably wouldn't have the same effect as steroid cream... and of course most of us have the thin stretch-marky skin associated with long term pred anyway, so I'm not convinced it would make it that much worse. I did have a couple of palliative care patients who had had syringe drivers for several months, for various reasons, and they seemed to get on alright with it.
I'm not an expert, though, so I wouldn't like to swear by it - just throwing out some ideas for people to discuss with their teams really.
Em
not used dex in drivers before (we tend to give as a once daily bolus), but in theory could replace some of your pred with it, so you wouldn't be increasing total daily steroid dose.
Having probs with new ward sister, who has decided that having had the pump for 2 years I should be returning it to the ward. She is now fighting with my district nurses, who I have never met, re funding. I am keeping out of it and holding on to this pump until I get another!
S
ARRRGGGGGGGGHHHHHHHH ran out of luer lock syringes last night. No problem I thought as I had picked up box of 100 syringes from GPs on Fri am. Must admit I didn't check the box just merrily sat it on dining room table, so 10pm last night I went to get new syringe from new box to find that they hadn't given me the right syringes. Thankfully at this point I hadn't thrown the old syringe away.
Of course being the bank holiday no body is going to be around til Tuesday. So spent morning phoning two local costas, neither of whom were able to help me. I have managed to find one more luer lock syringe hidden in my going out pack so I am going to have to re-use these two until I can get the problem sorted.
My question in this ramble is is it ok to re-use syringes in this type of emergency. and do they have any kind of limit on the amount of times you can re-use them?
Am having major problems re supplies now that I have moved. GP is doing his best but I am the first patient they have had on sub cut so it is all new to them.
love from a very harried and frustrated Rusty
Rusty i used same syringe for week before now and not had any prob, cant believe no one will give you any? Are you in contact with district nurse? maybe worth a try or a walk in centre? beg and plead?
Me well dont know where i stand?
As i think said befor specialist at lung centre Rob didnt think sub cut would worj for me as said was chronic difficult severe, not brittle his explanation was i didnt have well periods inbetween exacerbations? anyway local conas put me on as had been on iv amino for 13 weeks? and it waorked!! ha Rob said would work but would eventually stop? 6mths later lost effectiveness and give into Rob being right Lafet off for 6mths the locaql cons tried again last niv to get me home and keep at home for christmas, it worked and has continued too.Rob nicelt followed up and gave me my breaks etc and supplies, had to tweek a few time and increase and sttled on 10mgs. When wa sin for last break few weeks back broke rib, had check bloods and cardiac enzymes were up which ment heart wasnt coping too well, advise dby Rob to reduce to 8mgs which i did, repeat bloods werre better so he email saying was ok.
Now new admission would have been quick 2 weeks but had drug incident which put me back worse than day one, a period from hell, trouble with access meaning several time off iv amino sending me acute, so no wonder been four weeks? Asked Rob if could up and got email with shock? Hes now saying because of a prolonged addmission he feels the sub cut isnt doing its job and couls even be making things worse and we should plan to remove it when im discharged from here?? arghhhhhhhhhhhhh
I cant go back to pre pump addmissions 2mths long with only a week inbetweem at home? its not fair on me or my family? i can see his point of view that its job was to keep me out hosp but even giving me some good days and my addmissions shorter i feel is better than nothing? whats my alternatives? am sooooo scared?
Not too mention self purchasing a chrono pomp for £865!! so maybe up for sale on here in near future?
could firget Rob as cons here happy with it and as him and Rob arent bussom buddies he would 99% support me? but then have in back of mind what if Robs rieght and its that causing muscle probs?
Argggghhhhhhhhhhh dont need this at mo, especially emailing me that and leaviing me in limbo over weekend as too what my options are??
Had good chat with mum and nurse, think will get out her go see Rob and see what bright ideas he has and if dont agree will start coming too local for follow up.
Love Andrea xxxx
Hi Rusty,
I have reused and topped up syringes before with no problems.
Were the syringes the wrong size / make ??? My local suplier and trust has changed brand so I had to recalculate the lenght - they were shorter and the plunger is more flexible which caused the pump to carry on pumping and not alarming as the plunger bent. This was just a naff pump I think.
Can you remeasure and alter the rate? Easy for a 24 hr pump. not sure about other ones
Anyway, bit mean of the hossies not to give you syringes.
Take care
Kate
PS I got paediatric trachy tubes by mistake once!
Hello
I have been an idiot. I keep sof sets in a box in bottom of wardrobe and just get them out as needed. I have had a few problems recently with sites not lasting and didnt realise I only had 4 sof sets left oops. Rang asthma nurse at costa on Thursday and she posted me 3 which arrived on saturday. I was also told to see gp an get more of them. However Gp said they can not prescribe them. Where do you all get infusion sets from? I am going back to uni in a few weeks where costa that has been supplying all the stuff will be a 200 mile round trip. I still have the problem of only having 7 sof sets and I am going to France in 10 days so will hav to ring costa again on tuesfday.
I am also having a nightmare with bricanyl prescription as my gp is refusing to prescribe and the hospital at home are sayimg they can't prescribe indefinitly.
I think the problem is that I am registered with a gp in birmingham (who is very money concious and tells me I am too expensive he has threatened to de-register me in the past) but my sub cut is managed and funded by Royal Liverpool Hospital and Liverpool PCT. So Birmingham gp says it should be liverpool paying for prescription but Liverpool say it should be birmingham as I am permenantlly registered there. I thought we had a national health service? Sorry to moan but I am very confused
love
steph xx
Hi Steph,
Sorry you seem to be caught in the middle of everything.
Bricanyl does not cost that much per box - check out the BNF for a base line cost. - I don't see the problem there unless they don't see the treatment as bona fide etc etc etc ...
GPs cannot prescribe any of the syringes or giving sets. It seems to vary from area to area where people get their sets & lines from.
I had problems back in 1994-95 when at Bangor Uni and I used to get my butterflies posted from home because the GP & Cons were a bit ' arrogant!'
First of all, you need to get refered somewhere to a District nurse who can authorise medical equipment. In Essex all stuff from needles, syringes to comodes etc comes from a Council run Medical Equipment service but it needs to be set up via Dist nursey or may be a GP or your hosp cons??
Not sure who you can ask or which end you can ask ? Lpool or Brum?? Perhaps Liverpool PCT as they initiated the treatment - they should be able to provide, I think 3 months worth at a time to cover vacations etc - in effect your summer holiday. Speak to them and see what they can do.
Anyway, a small bit of amunition - you can state it is much cheaper for you to have the s/c treatment than to end up in hossie every week or so!
Take care & hope this helps
Kate
XXX
Steph
I would contact one of the pals for which ever area as they can then sort it out of you. You can find the contact details on the hosptial or PCT site. You need someone to help sort this out for you else you will get pushed from pillar to post and its so exhausting. I had a big issue with district nurses recently. The one who normally looks after stuff was away and I was asked to justify why i need to place an order . I refused as it had been agreed a long time ago and there is written confirmation of it in my file which tehy have and I told her about and in the end she put the phone down on me refusing to order my silouettes becasue they were too costly. Pals sorted the whole issue out and in theory it shouldnt happen again.
The dns here prescribe everything except bricanyl and as kate says the cost of bricanyl is a lot cheaper compared to one night in hosptial
One other thing as soon as I open a new box of sof-sets/sillouttes, needles or syringes I order the next one. The same with all my meds I keep a months supply at home, as soon as I start into that supply I order more, there is nothing worse that running out or worrying you are going to. Now I have all the sub cut equipment sorted down here it was fine for me have double order one month to get me into that month or box ahead routine. The only time it fell over was when I was getting everything sorted out in Devon, but now it seems to be working like clockwork (fingers crossed).
Ordering sof-set or sillouttes through the NHS ordering service can take 2 weeks but ordering direct from AMT takes a day or so but costs slightly more. My lot will order direct if it was urgent but by sticking to my start a box order another rule they can save a little by getting through the NHS ordering service.
Its the same with sharps bins I have one that I am using and one spare, when one is full I seal it, call the local council who collect and change the sharps bins here and carry on with the ""spare"".
If you are on sub cut you might also ask your GP tp prescribe a one off small sharps bin for holidays or I keep mine in the car, I just empty it into a big bin (carefully) when it gets a bit full.
Bex
On the same general principle, I keep a box containing a month's supply of all my meds which I never touch apart from occasionally to check and swap anything that's nearing it's sell-by date. Also keep neb masks, nasal cannulae, Epipen, PF meter, sharps bin (for my heparin injections), copy of medical history and protocol letter and various IM/IV antiemetics etc in there. Apart from ensuring that I never run out of anything it's also there ready to grab if I have to leave the house in a hurry, whether to go to hospital or for any other reason, and also, in a slightly paranoid Richard-Madeley-millenium-cupboard sort of way, ensures that I have at least a month's supply of stuff should the bomb strike or civilisation collapse in some other way! (okay, make that *very* paranoid, but I am anally retentive forward planner to the extreme and like to consider every possible scenario... don't know quite what I would do after a month if civilisation hadn't restored itself but hopefully by then I would have developed my own pharmaceutical plant or at least persuaded Alex to loot a pharmacy for me!)
It's not fool-proof of course (or should that be Em-proof) as when I was having my let's-not-call-it-anaphylaxis episode the other night I totally forgot I had an Epipen in there!
Eeeek there are a lot of squirrels out there & not just me!
I often order stuff esp meds when I open the box ( or nearly last box for nebs) .
I have a few baskets under my bed full of nebs, s/c stuff etc etc etc though I order when needed as not on s/c full time. My supliers are very good and can supply withing a day if needed. I always see a Equp van when out most days so they are alwasy in the area.
Regards the 1lt sharps bins, I cut ( naughtily) the pokey bits out of the large hole so I can get the syringes in without marmalising my fingers with tuf cut scisors. I used to empty then into a larger one but the 1lts are easy to get on repeate.
Ditto for me - Always keep a months worth of meds in stock, plus a 2 week supply in my hospital bag.
Am hoping to get my syringe nightmare out tomorrow - the ones they supplied me with are the normal drawing up syringes and don't have the locky bit on it. Will be up and on the phone by 9 in the morning trying to get this sorted.
The district nurses in Wiltshire don't seem to supply long term bits for patients, as they don't want to pay so it is my GP surgery who will be doing the ordering and supplying. Have given them all the necessary info - luckily i had just got a box of sof sets before I was admitted to the RBH in June and managed to procure 6 or 7 more while I was in the RBH so can keep going for a while. Tis just the syringes to get sorted asap.
I do have lots of spares of everything else and as already said I keep a month supply of everything separate. I also have two spacers, 2 neb masks, 2 pf metres etc at various cities across the country lol xxx
I use the non- luer lock syringes all the time now because the ward (who originally supplied all my stuff) won't get me the proper ones. they don't generally fall off so it is ok. But now the ward are having a strop and want the pump back and the dn's to give me one. Which they can't cos they only have one for all their palliative patients. and sister wants the gp to fund sof sets and syringes etc for me cos she doesn't want it to come out of ward funds. even though it was all agreed 2 years ago - we are going round in circles now, because we have a new sister who wants to change ecerything. but none of the nurses like her and they are all leaving too. it is crap.
hope you all get sorted with stuff ok.
Regards non-luer loc syringes, you can always tie the line down with the little black syringe retainer ( LOng bit not the pushy bit) along side the syringe - I have done this in the past.
Kate
sorry another question, was just wondering if any ones uses there legs as sites for sub cut. saw dr and he suggested using legs as my stomach is becoming lumpy and hard where sites have been so bricanyl may not be absorbing so good.
olive
yes i use legs quite sucessfully as i try to leave my stomach free for the 5 daily injections of insulin i have. It any sub cut sites which most comman are upper arms, tummy and thighs.
Good luck
Andrea xx
Legs are good too though not in me.
Top of arms are great and also the top of your chest if you have enough there to pinch - the place is about the middle of where your bra strap goes up or where you would pin a brooch on your clothes. Sof sets only ok if you have enough padding there otherwise sillouetes work best there at the usual 45 degrees
Kate
sub cut
hi i have a asthma pack with care plan drawn up between myself and con and ambalance service. it tells them what to do im adreline . hydrocortisome and back to back nebs unless not with it then just bag me cut and run. if i have not acessed im adrelline they do it . also info about my portcarth and a septic tecnic on how to acessport need a bigger bag ,but most local tec pars have had training and are willing to do it .i use schollites like bex but i agree arm top op leg just to give tummy a rest just hang in there.
After three years of using thala sets with graesby pump we are swapping to the Chrono pump tomo and they only work with sof sets/silloettes. So tuesday Sean used the sof sets with the sof serter device and said he didnt even feel the needle. Why on earth we used thala sets for soooooooo long when there was amuch better option I'll never know, I guess it was easier to stick to what we know.
Well his new school will be pleased that he wont be wandering about with a needle in tummy and wont be taking it out for sports. They were concerned about sharps safety, cant blame them really, a bunch of boisterous yr 7's in changing room and Sean taking needles out of tummy doesnt sound toosafe!
Well thats us now total sof set converts lol, Sean only ever uses his tummy I guess he been lucky doesnt get too lumpy.
J x
Yay for the Chrono! Sean's roomate at KA had one, they are such fab dinky little devices, I'm sure Sean will really appreciate the difference from the Graseby.
I found the problem with using my legs was they moved too much and the sites only lasted a day or 2. Slightly better with tights on top to keep the line in place but I don't like tights.
leather case for graseby
hi everone on graesby pumps, i have a leather cary case for the graseby pump that i found in the back of a draw that i am happy to post to any one who would like it, i have been using a chrono for two years so forgot had this cover, way too big for chrono, post me personally with address and will be happy to send.
george xx
thanks for all the adivce you guys have given re subcut. the comminuty matron has managed to get me sof sets as the butterflies are having to be changed everyday if not more and i cant use my arms or legs. hopfully once the sof sets arrive it will be alot easier.
hope everyone is good
olive
Chrono pump appreciation society!! LOL
Sean has his Chrono and its fantastic!! I would throughly reccomend anyone to get one if possible, they are so much better. On 10mg a day Sean now only has one syringe a day instead off two. The pump is half the size and fits so much better into pockets. Sean found the 20ml syringes didnt always stay in place properly and the new syringes lock into place. The company AMT have been a constant sourse of help to us and RBH which is so nice to have help at end of phone. Sean is first kid at RBH to have this pump and they hoping to finance some more so resp nurse emailed me for feedback. I've told her they shoud buy one for every child as it makes life soo much easier, the finance dept at Rbh gonna love me lol.
Anyway I wont ramble on but just wanted to let people know if you thinking about swapping over to chrono you should definatly go for it!
So pleased sean is happy with it Julie. I know I liked mine soon as I got it as it was so much smaller and amde life easier all round.
Hope he gets on ok at school tomorrow
Sterets
I had a bit of icky site the other day, luckily I keep a tube of antib cream so was able to stamp on it (the ickiness not the tube of cream) straight away. However on commenting on this to another sub cut user she was horrified I did not clean the site before inserting with a steret. To be honest I am pretty laid back and just wack the thing in (I can hear Debbie screaming that was not how you were taught from here) anyway, do I get sterets (little alcohol swap thingies) from th GP on script or do I have to badger my torbay for them?
Bex
Bex we are having a very similiar situation. Sean has never used wipes etc and very much favours the just bung it in method. It was mentioned to him bout using wipes/cleaning while on KA hols as might be a good idea so he has come home telling me he now wants to use them. I can see reasoning behind using them but we been very very fortunate that apart from odd lump/rash there has been no issue with infection. I havent attempted asking the doctor yet but went into local boots yesterday. The lady at counter looked very vague at me before packing me off with a tub of antibacterial sterile wipes in a tub assuring me they do the same thing. I wasnt convinced but havent got time to get into battle with receptionist at gp either So we will try these out for a while. Let me know if you get them ok from docs.
must admit I am also guilty of the just bung in approach and have so far *touches wood not had any infected sites. when i was last in the rbh none of the nurses or Debbie (they saw me change a sites a couple of times) made any mention of the fact that i didn't use a steret wipe before putting the sof set in, plus when i was in hdu my site was changed by one the nurses who didn't use a steret either.
sorry kinda of lost the plot here - excuse the waffling - anyway Bex let me know how u get on with getting supplies
Rusty
Welcome to confession time for all the S/c users who just whack it in lol
Looks like the whack it in gang are in the majority at moment
One steret lover coming up!!!
Eeeek I always use sterets but have had the odd putrid site or lump usually when I have left the needle in too long. There may have been the odd occasion when I have forgotten.
I get my sterets from the same peeps who give me the syringes etc - the Medical equipment services. (Via the Dist Nurde)
Sterets contain 70% isoproyl alcohol ( sp??) - alcohol at that % kills everything! There is no antibacterial stuff in it.
Get them for the sake of the bugs!!
Kate
XXX
i guess i still use sterest coz i am still a bit new to subcut etc also i find that some of the sites go yuck so am careful. think you can get sterest on prescription. i ahve a box of them that my step mums bro gave me as he is a pharmascist.... so i maybe only be guessing but if a phamacist can get them in surly a dr can write a script for them.
olive
'fraid not Olive - alcohol wipes etc cannot be prescribed by your GP. You'd probably need to source them the same way as you source syringes, etc. You can get various skin-cleansing sprays, washes etc on prescription but not sterets and their like.
I have heard various arguments regarding the use of sterets prior to venepuncture (taking blood) - at last count there is apparently no evidence that their use makes any clinically obvious difference. Ho hum. Just to add my 2p's worth....
(I still use sterets prior to venepuncture, in case you were wondering)
no evidence they make any difference to infection rates, as cath says. and they make it more nippy to put the needle in - unless you wait until the alcohol dries.
I never use them for me, and only use them for taking blood cultures or putting in venflons, not taking blood. we don't use them for sub cut infusion sties at work. The only exception would be if I knew someone had something like MRSA, when I might be tempted to use it just because if they did get that under their skin it would be so much harder to treat than sensitive bugs.
S
thanks for corretcing.. sorry it was an assumption i made. i not got them myself on prescript but thought coz a chemist cn get them theyt would be avialable. least i know now that to ask the community matron for them when i need them
olive
x
Yup, I read the studies too - apparently you have to wipe for over five minutes, using a new Steret when each one dries out, and then allow to dry to make any difference to the amount of bugs on the skin.
I stopped using them for venepuncture a while back, although sometimes I must admit I was tempted to go back to using them as the patients did seem to prefer/expect it. I think infection from venepuncture is pretty rare anyway - at any rate, I've never seen it or heard of it.
For venflons, blood cultures and MRSA positive or immunosuppressed patients I used to use sterile swabs with betadine (the brown stuff - contains iodine) or chlorhexadine (the pink stuff) and sterile gloves. For cultures I used to use full aseptic technique. That may just be my OCD side coming through though! To explain the reasoning behind it - when I was a House Officer, we had a patient who had two metal heart valves and had had numerous bouts of endocarditis (infections on the valves) - a life-threatening problem. I took a blood culture from her under less-than-aseptic technique and it grew Staph epidermidis - a common skin bug and almost certainly a contaminant from my skin or hers, but can also cause endocarditis. As she had been so unwell with it in the past, the consultant felt that he had no choice but to start treatment whilst we waited 48 hours for another culture result to come through. She had numerous antibiotic allergies so we had to give her vancomycin, a nasty antibiotic, and it knackered her kidneys. Fortunately, once we stopped the vanc, her kidneys made a full recovery, and all the other cultures came back clean, so she didn't have endocarditis. That's why I'm a bit OCD about sterile technique with cultures though - cos I indirectly once helped to give someone kidney failure!
Hmmm well that was a bit of irrelevent waffle - don't worry, I never heard of anyone getting endocarditis from a subcut site! If you are a bit paranoid about getting yucky sites, then some sterile swabs/gauzes and some chlorhexadine or similar is probably the most effective way. I have to confess, though, that if it were me, despite my OCD, I'd probably be one of the bung-it-in gang!
Take care all anyway
Em H
on a slightly different topic, any ideas why my graseby might be running slow? Have cahnged the battery despite the fact that it was almost new, and cleaned the dust out the battery bit, but am worried that it is cos I got it wet a couple of weeks ago. Any other suggestions before I take it to med physics?
s
Owl, I have never heard of a grasby running slowly I would take it straight to med physics messing around with dosage is dangerous.
Bex
Owl,
As far as I can remember, I have come across Grasebys running slowly at work now and again, and it invariably resulted in them being scrapped completely, as they were no longer reliable, and could potentially run either too slowly, or too fast.
I would get a new one if I were you
Hope this helps
Em
Sluggish & speedy grasebys
Hellooo!
I have had both! My last one was running too fast by 2-3 hours! Got it swapped and I have had sluggish ones in the past too!
One went super balistic on the M6 and pumped too much in all at once - though I knocked the boost but then the next AM it squeeked at 5:30am that it had run through completely and I was bouncing off the walls!
Water may have had an influence........
I haven't drowned a graseby but I have had very leaky latex free syringes many years ago and they leaked out through the plunger into the pump and left me struggling! Was told by a Med tech guy that they don't go round the U bend on a toilet! Was talking about other people dropping them in the loo at the time! LOL!
Get it changed if it is sluggish
Kate
PS interesting about the sterets! Though they are good for cleaning all sorts - can get permanent marker off things LOL!
Owl, I am sorry that sounded a terse post. I was at grandads with Mummy breathing down my neck to get of the computer and come and play bridge.
Actually graseby drivers running too slow or worse too fast scares me quite a bit.
Bex
Confession too!!!!!! I hardly ever used sterets or alcowipes as i was given, i got mine from clinic where got sets from like debbie for u bex?
Grasesbys, i had that losing time alot got so fed up with it.
Jules i too fab love little chrono and agree AMT are fab, i self fund my syringes and emailed em too say as its not working well it may be being stopped but had run out of syringed and they sent me some free and three sillohettes to tide me over? so nice xxxxx
Andrea xxx
Hmmm I have just had to re-site a silloutte not cos it was occluded but cos it was red but not where the tube was going in it is red and hot below it. It does feel or look like allergy it has a look of an mildly infected site but redness starts just below the ""hole"" in the skin and it can't be pooling cos that would be around where the line was going in.
I keep antib cream just in case and slap some and on and keep an eye on it but has anyone had anything like this before?
Bex
hi bex
i dont use the sillute as i found they went red very quickly, njust below the entry point, i am not sure what anti b cream will do, as have had several abscess before i would keep an eye on, if get really painfull and redness gets bigger see a doc.
buy the way if you dont mind me asking, who supplies your sets? as you may have read my thred i am having funding issues.
to and goood luck, george xx
Georgie, I had skin allergy problems with the sof-sets once I showed off my blistered red tum there was no problem with them agreeing to silloettes. The local PCT fund everything I was lucky in that there were already several people down here on sub cut so it is not an issue. Area is still red but not so angry I can't see how it can be an abscess as the red area does not even come up to the ""hole"". I am using my arms atm as my tummy is ultra sensitive but I might switch over for a week or 2 to give the tops of the arms a rest.
Bex
George,
My stuff comes from a council suplies depot - Essex Equipment Services - part of Soc Serv, I think and is authorised by my District nurse - whoever she it? ( Never met her or the previous one!) So I assume it is the PCT that is funding mine.
Try the usual line of ' it is cheaper to supply the syringes etc that to stay in hospital' etc. sorry can't be of more help. I did ask my local about a Chrono - heard a nervous laugh and was reminded that the Health trust is £8million in the red!
Regards the red lump, Bex, if your using sillouetes the lump can apear away from the insertion site - where the end of the tubing sits - I have had lumps a cm away from the hole so to speak.
I prefer the Sillouettes, bit worried at the mo as supplies are having to order them and only have sof sets if run out at the mo. Still better than butterflies!
Kate
Bumped up.
Bex
my son has sub/cut bricynal and i get the supplies of syrengies needles and thela needles tht is wot my son uses to dielever the med its a small needle with sticky stuff on and it goes in his tummy and gets changed every 3 to 5 days depending if it stays there or not
Hi,
I started on S/C bricanyl in early feb after trials at my local hospital, I presently am using soft-set infusion sets, however over the last few days I have been having problems. My syringe driver is repeatedly come up with the message occlusion, but there is no obvious kinks in the line, so i changed the site and which has helped but i'm still getting these messages occassionally. When i took the old needle out it was bent at a 90 degree angle, which was obviously the cause of the occlusion. I'm currently an in-patient at an eating disorders clinic for anorexia, so i'm quite small and don't have a lot of fat reserves to siter the needles and it was suggested that i did not have enough of a S/C tissue to be using these needles. I did some research and have persuaded my clinic to order some sillohette infusion sets to try as they are described as being better for leaner people.
I was wondering what people's experiences of these sets were, has anyone used both, are they harder to insert correctly because of the angle?
Any info or suggestions would be gratefully received
Many thanks
Libby
xxx
The silohette is probably a far better idea for if you have no ""fat"" reserves as it goes in much like ""needle"". Best of luck with getting the funding.
Bex
Hi,
I have used both sof sets and silouettes, and the silouettes are no more difficult to put in - the angle is not really that crucial - so long as you don't put it really shallow or really deep it is fine.
I use sof sets, mainly because that is what my hospital actually manages to order (they aren't the brightest), but also I find they last a wee bit longer - but I am not exactly on the lean side! I do have some silouettes though, so if you are having trouble getting them quickly pm me and I'll pop a couple in the post for you to try - I don't use them except when the ward are being numpties and haven't managed to get me sof sets in time.
S
Hi everyone
I have brittle asthma which is making my life a misery! I'm on 60mg pred as maintainance dose and just had to come off methatrexate due to an allergic reaction!
I asked my consultant about trying s/c infusion, he said it was an outdated treatment ????? I said that people were still using it as a treatment. He said that I would get used to the dose and have to continually increase it to stay on top of things and that I'd have more problems with absesses from the s/c site.
I was just wondering what your thoughts were and if your dose had to increase all the time and if you suffered abcesses...
thanks
jayne
Hi,
if you have the time & patience scroll back through this thread for all the pros and cons.
I use it on an as & when basis now as I did become tollerant to the ventolin and needed lots of it either s/c or IV to have any effect. Having even short breaks or using it as required has sorted that. people are different though and some people here are great on a constant dose all the time. Also, I had problems with the whacky doses and my heart (Not serious ones though!)
Regards abscesses - this can vary greatly from person to person too! I had a few small abscesses, usually blind sterile ones but no great big holes as such.
It depends on your skin type, steroids, fragility, cleanliness of the sites ( for me anyway!) how long you leave the needles / sets in etc.
It has been used since the early to mid 1980's I think and altough asthma medications for the mild to moderate have come along in great leaps & bounds, brittle asthma has been resistant to many of the new treatments that have less side effects such as the combo preventers like seretide & symbicort. We have to resort back to hefty doses of relievers as preventers in a way. containing the symptoms as opposed to preventing them.
I see you have tried methotrexate so you seem to have been trying everything so far. It is a tricky one. Brittle asthmatics don't seem to match the text books in many ways.
hope this helps a bit!
Kate
XXX
thanks kate
I'm seeing my consultant again next week so I'll talk to him again about it.
thanka again
Jayne x
Hi Jayne,
sorry to hear you are struggling.
I have been on sub cut for 3 years now (I think, time flies!) and have had very few problems, although I know that some people have more difficulties.
The main problems as you say are abcesses (but these are almost invariably sterile, and most people don't have problems with them), skin problems - allergy to the sticky dressings - which most folk can find something they manage with, and fast heart rate, like you get with nebs, which usually settles with time. Also some people find it lowers their potassium so need that replaced.
According to my cons (who has done most of the research in this area, lucky me!) very few folk develop tolerance, and as Kate says, if they do having a break every now and then helps that.
Most places that use subcut do a trial where you get either terbutaline or saline for up to a week then swop - neither you or the consultant know which you get when - to see if it will really help - because it is such a faff they need to be sure it will help rather than just guessing.
The other option he mentioned to me was bambuterol - an oral beta agonist - which is less faff but not as well tolerated.
If I can be of any help, pm me
S
heya, just wondering whether those of you who are on sub-cut had it started by your local or was it at a regional centre?
x
Nicki it seems to be a bit random. But there are certain quite strict ""guidelines"" or ""advice"" for when sub cut is indicated. I had to go through a ""blind"" trial to clinically prove it worked for me, and also it was a chance to check that I was happy with it and that I was having no adverse reactions to it. It is strong drug and invasive in its administration and a great deal of care and caution need to be exercised before prescribing as it. My local in Torbay just ""hand"" it out but only to those patients who fit the right ""profile"" and only after all other options have been exhausted.
Regards
Bex
just bumping this up for wheezeyjohn to read.
Olive
don't suppose anyone knows the answer to this, but thought I'd ask and see.
Do sofsets have latex in them? I have been really itchy since switching back to a sofset from a silouette, especially round my site, and I am suspicious for various reasons that I may be latex sensitised now, so I wondered if that was the reason.
If nobody knows I'll give AMT a call.
Hey Owl,
I don't think they can do, as I have a friend who is latex-allergic who uses them without a problem - and she tends to come out in spectacular rashes if she's touched with anything latex. Could it be dressing-related? Hope you get it sorted.
Cathy
Owl, I can't use sofsets as both dressings give me little blister type rashes, silhouettes are no problem at all. I have had a good look at blurb and can't find anything that says they have latex in them. But on the other hand I can't find anything that says they are latex free.
Bex
I am latex sensitive and OK with Sillouettes.
I assume Sofsets are OK too!
I do get a bit itchy sometimes with them but put that down to heat, skin problems and being in for 4 days.
Kate
PS I emailed Medtronic last night about the latex.
Got a reply from Medtronic - good news!
All softsets , sillouettes etc are latex free including the adhesive.
Kate
hey guys been on subcut for the last 4 weeks in hospital. I'm now home and a tad scared, I was using the orange butterfly needles in hossie, resp nurse gave me a box of soft sets today and showed me how to insert etc wiv the soft serter. EEEK! The district nurse is going to come round regulary to make sure I'm doing it ok.
I'm using mefix as we found out I was allergic to opsite. It dosnt stick for very long and isnt very waterproof grrr.
I'm just a bit eeeek and scared as its all new to me.
Hi Claire,
I know its a bit daunting, especially when you first find yourself responsible for doing everything to do with the sub-cut. But you will be suprised about how quickly you adjust. I personally find soft-sets really good and quite comfortable, i now use silloettes but still use soft-sets sometimes, it may be worth talking to your district nurse about different sorts of dressings you could use as an alternative because they are usually pretty knowledgable on the subject and maybe able to find something you can tolerate and maybe waterpreoof, it can be a bit of trial and error.
You will prob have quite a few questions at first as varios situations pop up but im sure people will try and help answer them if they can.
hope that helps a bit
Libby x
daft question!!
I know its ok to shower with the sof sets in but can you bath with them in I didnt think to ask when resp nurse said i could detatch from line then jump in the shower. I dont have a shower!! im using mefix as the dressing made me itchy and thats not waterproof is it??? I couldnt find the answer anywhere and I dont have contact numebr for DN yet, so I gave up and just took the perfectly good working line out while I had a bath. I dont like the thought of ending up with yuckky abcesses!
hi claire
I bath with soft sets all the time as dont have a shower have done for years and its never caused any probs yet oh apart from obviously a wet dressing that i just change when i get out !! dont worry about getting it wet .. and i also go swimming with it in i just disconect line and cap off the end and hide infusion line under cozy x
thanks roxy now all I need now is some kind of bag to put it on when I go out, anyone got any good websites?? I had the pump in my jeans pocket earlier and the syringe kept falling off!
I used a bumbag bought from Millets. it was jsut the right size for the driver and the case. i think it was a life venture one!!!
Olive
Bags for syringe drivers, well what ever you do don't buy the ones made for grasebys they are £24.00 each yikes. If you are clever with a sewing machine you can make them quite cheaply. Or like me and useless with a cotton and thread go to TK Maxx. They often sell small trendy bags that are perfect for syringe drivers. I use ones by quiksilver, once had a child asking me why I was using a ""Skate Bag"", felt really funky and cool after that.
thanks olive and katina good idea about the little over the shoulder bags I'll be on the look out next time I go shopping! A bumbag isnt really my style though!
thanks peeps
clare
i went to see my consultant yesterday and he suggested subcut bricanyl for when i am particularly unwell that i can have subcut at home which the nurse will teach me how to use if we go ahead with it. i'm quite confused about how it will be implemented and im worried i will do it wrong, i was a bit all over the place i didnt ask all the questions. so i was wondering if anyone answer this for me?
How painful is subcut? I know i sound childish but im very needle phobic!
Hi Simi,
I have subcut all the time so not sure how an as and when type set up would work, but I know that kate uses it in this way, so im sure she wil be able to offer more advice on the subject. But when I started it I was admitted to hospital where i had a trial to see if it would be effective, once it was decided I would be using it, one of the resp nurses went through eveything with me, how to put the lines in, how o rime them, how to draw up and load the syringe driver,she wrote everyhing down incase i forgot and also gave me a manual thing for the syringe driver, which goes through how to use it andhow to resolv some of the problems that could occur when using it. She also gave me a direct phone number where I could contact her if I had any questions or peoblems that I wanted to discuss. Also don't worry about the needls thing, I use soft-sets or silloute lines, its not an obvious needle, and once in place you take it out leaving a plastice tube,its only n introducer. Suprisingly it really is not painful, a slight scratch, nowhere near as painful as an IV cannula being put in, which is what i thought it might be like. You also get used to it really quickly, you would be suprised. Once in place it shouldn't hurt at all, I usually can't feel it at all, sometimes the site stings a little for a few hours after I put in a new line.
Sorry I have written loads, any questions do ask.
Libby x
Hello Simi,
As Libby says, they will start you off in Hospital etc.
I find the best way to get used to the needles is to do the very first one yourself!
That way you don't dither about the needles and it hurts less when you do them.
I pinch the skin hard, release it and pop the needle in, Pinching fires off the nerve pain receptors and if your quick, they don't have time to recharge.
I used to use s/c all the time for years but went over to as & when because I had problems with tollerance. I can't really advice how your cons will tell you when to use it, that is up to them.
Hope this helps
Kate
x
I use sub cut too, I also use a sof set inserter to put sof sets in. This can take the indecision out of putting them in because it is so quick. Also find it much easier to use a introducer for sof sets because it saves you pushing them into your skin manually, which occasionally I find difficult if not well. Sof Set inserters are available from the same people who make the soft sets. I have two, one I bought myself for £20 and one the district nurses paid for.
thanks for the replies, im feeling a bit more reassured now and subcut doesnt sound *as* daunting!
simi x
painful site
I have a weird pain to the side of my subcut site, its working fine but every now and again I get a shooting pain and it lasts for quite a while, the area isnt red so i'm reluctant to change it but its very uncomfy. just wondering if anyone knows what it could be. I mentioned it to one of the other patients and she said she had the same pain then she developed an abcess!!
I sometimes got that sort of pain and it coinsided with when the syringe fed the bricanyl thourhg if that makes sense. I think it was the bricanyl bunrning going through. I often changed the site after it doing this as i got pooling under the skin after it started sort of burning.
olive
Hello, The bricanyl can be an irritant and also the end of the sofsets do too and irritate the area & nerves. I haven't experienced absesses from this. Absesses usually develope either from the needle / set being in too long, you ignoring the red hot feeling ( done it ... naughty!!) and occasiionally pooling of the bricanyl causing a sterile abcess.
Sometimes moving can cause that pain. If it goes on too long, change the set otherwise you can ignore it.
Occasionally I have had it and it is because it has caught a capillary and then bleeds all over the place ( not good on a St John Uniform! LOL).
Hope this helps
Kate
Thanks kate and olive, hmmmm it did feel a bit like nerve pain, anyway I told nursey this morning and she made me remove it, I'm having a rest from tummy and using thigh.
Just wondering do peeps have a preferred site I like using my tummy so have only been using it or do you alternate between like tummy, legs, arms, etc every time a new line is needed????
thanks
clare
When was on subcut I used tummy my thighs and arms wouldnt work. It hurt too much. Tummy did get sore after a while but would alrternate side each time i changed site to gove one side a rest.
Olive
sites
I am having problems at the moment with pain when I am putting a new line in, it seems that when I try to put a line in somewhere that has previously had one, that its really panfull to insert and I don't have many places I haven't used. They are also not lasting as long anymore.
I was wondering has anyone else found this? and is there anything I can do?
Thanks in advance
Libby x
Hi Libby, sorry your having problems.
Steroids can affect your skin along with the continuous needle insertion etc.
Pain, Try pinching the area , release then pinch again and insert needle. Piching first time fires off the nerve endings and they take a second or two to recover.
This may help.
Which areas are you using? You can use tum, hips, tops of thighs,tops of arms and if enough skin s/c fat the top of your chest.
Can't think of anything else at present......
Kate
Thanks Kate
I will try the pinching, and hope that helps, I never used to have a problem, but recently its so painful, maybe I am just beng a wimp lol!
I am using mainly my stomach, and sometimes the tops of my thighs, I have a bit of a problem finding sites as I am quite underweight at a bmi 12 so fat reserves are somewhat limited
Thanks again
Libby x
*bump for wss*
well... picked up everything today and have some fake skin to practice on. Hopefully it will work. I'm just bumping this so I can find it again! Wish me luck! No doubt I will be on here asking questions!
Hey,
This isn't actually about s/c, more about sharps bins.
I have a sharps bin for my BM lancets, and it's getting quite full now, but the dr's won't take it back saying it's up to the hospitals, who also don't want to know. any suggestions?
Vicky
Vicky,
I used to take mine to the pharmacy and they got disposed of there and got new ones from the hospital. It is a complete footer but was the only way I could get new ones and get rid of the full ones. You dont need to put the bm lancets in a sharps bin i dont think though.
Olive
Hello all!
Question already!
I have my sof set in and a few times when the plunger moves, i get a stingy pain in the set. Is this normal? It goes off pretty quickly and would rather not change the set unless I have to!
Thanks!
Hello WSS,
I usually leave sof-sets in for 3-5 days. Sometimes when you get a bit warm & sweaty they can sting a bit. (Though I use the sillouettes now, 45 degree angle jobs)
Does it look red or oozing? If so, change it. If not and it settles down, leave it. But please check that the bricanyl is going in and not back flowing. If it gets very uncomfortable change it too.
Make sure you rotate the sites and leave each area if possible for a week un-poked!
Hope this helps
Kate
Thanks Kate
I think it's ok, I think I am only going to get one day out of them though oh well!
OK.....another q!
Is there any other stickers available for the sofsets? I do like them as they don't hurt but i seem to be allergic to the glue on the plaster bits.
Also dealing with a headache today so not a happy bunny. Also..... HTF do I have a bath????? It's so annoying trying to keep the pump away from the bath.....ugh... may have to just do it when the syringe needs changed.
Thanks!
Sticky stuff,
You can use different types of tape, just fashion it around the sof-set.
mefix - you can cut out your own shapes to go over the sof sets.
Are you using the clear tegaderm that comes with them?
Ask whoever supplies your stuff for some different tapes to try
Bath. - Just bung the line off - 20 mins without the s/c should be OK. I sometimes boost it before detatching.
Either get some IV bungs to bung the line.or use an empty syringe - hang over side of bath or tape the whole lot to yourself. Make sure you dry the site well afterwards - mefix dries quite well.
Another option, if your supliers agree is to get Sof-Set Quick Release lines - these are detatchable with a short line left in place and waterproof.....
Have a look at applied-medical.co.uk/ for other sets etc........ but will depend on your supliers / money / etc. At least these days you get soft insertion needles..... when I started on s/c it was solid butterfly needles which bruised really easily and hurt if bashed!
Kate
The sof set QR sets are excellent for quick disconnection for a bath/shower/swim etc! I've used them since starting on subcut and there so much more convienient than the non detachable ones.
Ask about them, would make life easier.
Clare
cheers i'm running out of space on my tummy cos of the rashes so will speak to my resp nurse to see if she can get me some other sticky stuff.
The QR sof sets sound good. Will take a look at it. Resp nurse wouldn't give me any bungs said she was against them :*(
Have you tried tops of legs, tops of arms or even top of chest if you have enough s/c fatty bits?
Avoid areas with scars or stretch marks though......
Kate
Thanks Kate,
Will give them a try!
Hiya all,
Just wanted to say thanks for all the help. The thigh seems to be much easier, but then again there are no stretch marks on my thighs! Also realised my sof set is a QR one so seems very useful. Just need to work out how to use it now!
Hope you are all well,
Thanks again!
WSS, glad to be of help.
Glad you have the QR ones.... they are great!
Hope legs working out OK...... just gives you more options and more time for other sites to recover.
Being on steroids can be a bit of a problem regarding skin etc..
Kate
xXx
WSS, glad to be of help.
Glad you have the QR ones.... they are great!
Hope legs working out OK...... just gives you more options and more time for other sites to recover.
Being on steroids can be a bit of a problem regarding skin etc..
Kate
xXx
My consultant is starting to think about this for me... I am in hospital with attacks at least once a month. I am worried about it I am about to start my nurse training and I was wondering could it interfere?
Another question how do you get suppilies? My consultant is in Birmingham I'm going to Surrey for uni so dont realy want to be going to Brum every month just to get suppilies
Hey Bizkid,
Hope you are feeling ok you get used to it and if it works it's better to be on something to get some sleep and be able to do what you want rather than let your asthma dictate.
The hospital usually writes to your local GP so they prescribe it for you rather than the hospital. Good luck!
I am in need though of a small sharps box. Does anyone know who supplies it? The hospital mumbled something the GP shrugged and I haven't met the district nurse yet and the pharmacy told me to go to the addiction services! Which I am sure wouldn't help as I'm not addicted....
I really need one for work.........
Hi wss
I get 2x 1 litre sharps bins on my repeat prescription from my GP.
Hope this helps.
Sharps bins, I get 5ltr onesfrom a central med supplies run by the Council / health trust. Theya rrive with my needles etc. I can get 1ltr on scrip, though the tops are a bit of a pain with teeth... difficult to get 20ml syringes in them! (I snip the teeth off!)
Kate, I'm moving to your area. I have 12mg/24hrs so you know how much use 1litre sharps bins are to me, but at least I now get 2 a month, it used to be 1, lucky me! Cant believe I'm jealous of a sharps bin LOL. Oh the joys of asthma.
Right post Emz? Have bumped it for you Em xxx
You're a star! This was exactly the post I was looking for! Thank you!
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