I'm wondering if anyone could tell me their experience of having a sub cut pump ~ has it helped? has it caused any skin problems? do you have the (equivalent of) salbutamol shakes all the time?
my cons is really against these and says they're 'witchcraft', but witchcraft is about the only thing we haven't tried to help my asthma. I really want to try the pump, to find a way to convince my cons to let me try it, but i think it would help to have more info for myself and others' experiences i could p'raps relay bits of to my cons.
Any info, experiences and idea of how to approach this would be very much appreciated.
BeckyG, I have recently under-gone a sub cut trial at the RBH and I am now happily using it and it helps. The more I see and read of people on sub cut the more I am convinced the right way to get and use it is to under-go a proper clinical blind trail, it is a dangerous drug the side effects are not to be ignored and the benefits must out weigh the inconvienience of carrying the pump siteing the needles the shakes the cramps the fast heart etc. I would strongly recommend you ask for a referal to the RBH for a proper accessment of your asthma and if they think sub cut is the right way to go they will conduct a clinical trial.
Sub sut is not the answer to everyones problems and it is no wonder drug sadly...
Bex
Hi Becky
Unfortunatly this doesn't work for everyone.
My con tried it with me back in january with bricanyl running and i only had the pump for 2 weeks as
a) my symptoms did not improve and b) i was either allergic to the needles or the bricanyl as the nurses kept having to resite my needle every day as i got HUGE white lumps under my skin about 2 in wide. It also stang a lot and i could feel the stuff going in my skin every time the pump went off which was every 2 mins!
Needless to say i was covered in purple bruises too.
I did have shakes but it was coinciding with everything else i was on - nebs and inhalers too.
My advice is to go for it if it is offered coz even if it doesn't work then you've not lost anything.
Good luck and here's to witchcraft!!
Kym
thank you both for your replies - v helpful.
i know that sub cut isn't the answer for everyone but i'm in the position where i have been told that there is nothing more they can do for me except wait for science to catch up with the extreme nature of my disease, only i might not live that long. (yes, that is how it was put to me). i can't help thinking though that there is this one last thing that hasn't been tried, and while it isn't right for all we won't know if it might help me until we try it.
bex, i see people here talking about RBH but aren't very sure which hosp that is - brompton? birmingham? some place else? my con here at newcastle freeman hosp (FRH) is the regional asthma specialist, but also has held national positions and helped work out those national guidelines for asthma that some of us seem to out do. so the point of telling you that is to say that he does know what he's doing with my care ut has so far not 'allowed' me to try sub cut pump as he's so anti them. I just want the chance to see if it might help at all, see if i can tolerate it, see if it would be possible to reduce the pred at all as my maintenance dose is 50mg!
can you tell me bex, what kind of thing did your docs did to assess you for your pump? how long did it take? and has it taken long for you to get used to it.
kimii, i'm so sorry the sub cut option didn't turn out to be right for you. I guess that at least now you know that. did you know very quickly that you couldn't tolerate it? did you have to go through an assessment to? and if so, what did your docs put you through for it?
i really value the info you've given me and the sharing of your contrasting experiences. thanks
becky
RBH is Royal Brompton Hospital, as far as I am concerned you can not get better than here. They really go through everything thoughly and as others will testify often find that asthma is not your only problem.
Here you have to do a proper clinical trial, 2 weeks in costa and they either give you the bricanyl or saline you don't know which you are getting, they monitor you and your symptoms closely and if the case is proved for S/C then you go home with it. Having seen what it did to someone who was just given it by their local without proper investigation and proper clinical assesement i am really glad I was refered here, S/C is serious druggage. it took a while to get used to logistically from the effect point of view it was instant.
Good luck my local cons is highly respected in the ""chest world"" but thankfully he knew when he was out of his depth and refered me on the professors here.
Bex
HI Becky
Im so sorry your having a hard time of it.
When my con put me on it she thought i was something else that might help and was convinced it would.
I found out quite quickly that it wasn't working as the lumps started to come up almost straight away but she wanted to persevere just in case it was just a initial reaction and my body would get used to it. Then i went to see her after i was discharged from costa and she took one look at my stomach and said it had to come out there and then.
Im in the same situation as you - i was on xolair for the 4 month trial period and it didnt really work for me and as i am on top whack meds i too am waiting for medical science to come up with some fantastic drug!!!
Take care and try not to get too down - i know its hard but you know you can get all the support you need form us here.
Sending you pink fluffy hugs.
Kym
white marks under the skin sound like pooling which means the needle is not in properly did you have needles or were you able to get sof-sets
Bex
Kymmi it definitly sounds like tissuing! But did you have another reaction as well? Are u generally very allergic? Have they given you any other options?
My 10 year old has been on sub cut bricanyl for 2 years. We are very fortunate that he has been a patient of Rbh since he was 3yrs old. It's really dissapionting that your consultant wont be more open minded to the options available as sub cut made a real difference to Sean. When the pump broke down over night a few months back his pf went down by 50 % which is proof to me that it really works for him. During the recent hot spell we had a bit of trouble with rashes etc from the dressing but needle wise he has only had one very lumpy episode. His tummy is bit bruised at times but in our experience the postive effects definatly outweight the negative. As always there is no guarentee that a drug will work but surely only a controlled clinical trial will the cons that.
Good luck!
I definitly had the sof sets but i was still wheezing while taking it so it did no good at all. The needles were in fine too as i did ask on a couple of occasions and the docs checked and said they were in fine.
I say my cons this morning and he'd read my letter to him. He still won't give me the subcut pump but he did explain his reasoning a bit more to me - the pharmacology and biochemistry of it as well as personal opinion and research. He has no faith in them and doesn't think that they're very effective or reliable. Anyway, he said that there's a tablet that does the same thing that the Bricanyl pump is supposed to do (this is the first I've heard of this but apparantly it's not new - in fact hardly ever used) and he's willing to try me on that. It's called Bambuterol and is a slow-release (24 hour release) tablet that's taken once in the morning. He said that I might get tremours on it and if I do then he'll have to reconsider it and probably stop it, but I can give it a go between now and my next clinic appointment - 10th August. It feels like a compromise if nothing else and there's the possibility of a glimmer of hope there so fingers crossed.
The other news is that I can leave costa tomorrow! Yay! I don't know how long it'll be for this time (but then who of us do?), but here's hoping that it's much longer than 2 weeks.
Thank you all so much for all of your replies to this post - they're all very helpful and I was able to mention some of them to my cons this morning in our discussion. I'm just hoping that the Bambuterol is effective for me and I don't have any horrid side-effects.
Becky.
Becky
I take the normal release Bricanyl Tablets 3x a day (upped to 4 at present - OVER normal dose as chest is stubborn) !!
Bambuterol is the slow-release version and is one tablet at night (normally as that way you sleep most the side effects off) !!
You will get mega shakes for a week or two but they were off hun !!
Good luck !!
Thanks for that Wheezer. My con said that Bambuterol is quite an old drug but to be honest I don't really care if it's from the Stone Age if there's any chance of it helping me. Also, he's prescribed it for me in the morning so I'll have to see how I go with that and maybe change it to night time if I'm having real trouble with the shaking.
It's great to finally meet people who know exactly what this kind of thing is like to live with, and I can ask questions to about their experiences. For so long I've felt like the only person in the world with brittle asthma, even though I've known that in theory I'm not. Thanks so much for being here.
Becky.
Its defo best to take it at night (in fact looking at the BNF online says it should be night time too) as otherwise it will ALSO keep you awake otherwise !!
BNF Quoted here:
""""Dose
20 mg once daily at bedtime if patient has previously tolerated beta2 agonists; other patients, initially 10 mg once daily at bedtime, increased if necessary after 1–2 weeks to 20 mg once daily""""
I have to make sure i dont take the last dose of mine to late BUT I suffer insomnia anyway from my permanent Betamethasone tablets !!
But between the Bricanyl tabs and the change to Betamethasone long-term and not Pred I have had NO admissions for my longest ever time !!
(Shhhhhh 2.5mths and counting) !!
Gosh, makes me wonder about my witch doctor professors here at the National Heart and Lung Hospital.
On a serious note the pharmacology for Mag Sulphate and Amino is not proven and some hospitals don't use one of the other because of it, yet we all know they work, I am taking stupid amounts of amino IV I don't know of another costa who would allow this dose but I guess someone somewhere has to push the boundaries at some point or else porgress will never be made.
Clincally if I can go through a blind trial and not only demonstrate with clinically measureable improvments in direct correlation to the amount of drug or placebo I am getting but also am able to rattle of what days I was getting what and the lower or higher dosage I would say that is case proven. If anyone tried to take my sub cut pump away now I would probably kill them. I can remember the nights of 10 b2b nebs, the total exhaustion and the danger all too clearly. Now if I need more than one neb at night I wonder if I am going down with something.
sorry not been around to help advise, Bex etc seems to have given yuou some good infor and avice anyway,
I have been using s/c since 1994 although on an as & when basis now, mor one that off at the mo. It works well for me and helped me get some sort of life back. I managed a few hours without it yesterday after comin off IV Ventolin but after 2 nebs at 1AM we starrrted it again.
Regards other IVs, my hospital will giev all three! IV Ammo, IV Mag & IV Ventolin.
they all work for me to varying degrees and therefore have a choice etc.
Back to s/c it doesn't work for everyone but worth a try if your cons would be more open minded??
Take care
Kate
XXX
Kate, glad to see you are home and doubly glad you are back as you are our resident expert on all things sub cut Which is your local costa I will make a note that I can go on holiday there as they are sensible enough to use IV Sal, I am slowly drawing up a list of costa's who won't use it.
Bex
Thanks again all - it's great to get this info first hand (though i think I already said that yesterday or the day before). I always get IV amino and it works really well for me, though it initially can take several hours to kick in so i have b2b nebs as well usually, though I have to be careful as my K+ often goes really, really low and I end up on IV K+ too. I've had IV Salbutamol lots of times as well but I get *terrible* shakes on it so they don't like to give it to me if at all possible. As for IV Mag Sulph, I can't have it as i'm allergic to Sulphates (amongst many other things), which explains why when they have tried giving it to me in the past (pre discovery of what my weird allergies are) I would often get much worse rather than better. Now i get anaphylaxis with it so really not going to help.
Kate, I'm glad to hear that you're back home again (i just got home this afternoon too), and thanks for all the info you gave me. When I last spoke to my cons about the Bricanyl infusion (yesterday) he continued to say that he really doesn't like them, but then he also seemed to say that perhaps maybe possibly he might reconsider the possibility but at the moment is only willing to try the Bambuterol.
Re Bambuterol: I had my first dose this morning but asked the SHO about whether it should actually be given at night as i too read that info online last night and printed it off. He said that yes, actually it should be at night but having never prescribed it before he had presumed it was OM not ON. So tomorrow I'm to take it in the middle of the afternoon and the next day at night. i also queried the dose of 10mg rather than 20mg seeing as I've tolerated B2 agonists well in the past. He spoke with my cons who said he wanted to start on 10mg and review it in clinic next month (providing of course that I don't see him before that as an ip). I happy with that as it might mean that the initial side-effects have a chance to settle down and not be too much to begin with.
Bex - I'm so glad that the pump is working for you and yes, I'd agree that the trial you went through confirms it's usefulness for you. I hope that if the Bambuterol turns out not to be right for me then my cons will actually reconsider the pump and I'll be able to explain that i have met people online who it has proven useful to.
hi becky
I've not posted on here in quite a while, but i've been catching up on the posts. You are in a similar situation to me, where the only option left was the sub cut, but my con (and most cons in scotland) are against it. Like your con he suggested bambuterol about 4 months ago, and i'm now on 10mg twice a day (morning and night). I had shakes to begin with, but now they are not obvious. Bambuterol is helping me quite a bit as i don't need my nebs as often. I hope you are getting on well with it and it's helping. You never know, maybe one day the con's will come round to the idea of trying sub cut!
I hope the Bambuterol is helping you. I do know of one person in Scotland who has used S/C.
I have had mixed views when in Scotlant - Edinburgh were not too happy, Arran hospital was OK about it and Crosshouses insisted I used a big IVAC syringe driver on a stand when I was in hossie - they also loaded me up with Aminophylline and continuous IV Hydrocortisone (was bouncing off the walls... literally!)
I had total negative attitude when in Bangor North Wales though!
It is really the luck of the draw with consultants and I wish they all would keep an open mind on it. Mine is very good.
Also, how are peeps coping with the Heat and the needles? mine are getting quite soggy, I keep popping extra tape on but makes it yucky at the site after a couple of days!
Take care all
Kate
XX
My sub cut has been discontinued!! My cons said he didnt think it would work because it only works on a very limited number of asthmatics mainly the few true brittles out there. Was a bit frightened at first but must admit when i first started it i had my best couple of weeks ever and then in didnt work aswell which is what he said would happen but i didnt want to believe!! anyway its one less thing to worry about now just means am in costa a lot more often till this miricle were all waithing for appears!!
Love Andrea xxx
Kate
Im changing my silouettes daily. I had to till skin calmed down but now with heat I have had to continue changing it daily. District nurses dont seem to be arguing about the amount I am going through but then they had stern letter from cons telling them I had to have enough to change everyday.
Caroline
Belated caught up with this thread. I am still worshiping at the alter of sub cut. I have not had a serious early morning dip since I started on it. I still can't beleive I was b2b nebbing between 5-12 nebs every morning no wonder I was a walking zombie. I think even the RBH were amazed when they saw the state of me without sub cut during the trial. I still do get a little morning dip but the only time i needed more than 2 2b2 nebs was when I pulled the syringe out of the pump during the night. Frankly I would cut my right leg off before I gave back my pump. It is not and never will be a miricle cure as I discovered recently. I still have asthma and the day to day problems are still around although how much worse they would be minus the sub cut is hard to say. But givingme back a decent nights sleep and not having to spend tat hour nebbing lungs back to life in the morning has made a huge difference.
Bex
Sof-Sets and the heat
Having thought i had cracked sof-sets I now seem to be going through sof-sets like crazy I can just about get them to last 3 days but no more. Is it me the heat or the dressing thing they supply, i have deffo noticed life of set-set is much shorter since being home. I am changing them cos the whole area is red and sore, they are not pooling and I have some anti-biotic cream from GP to put on area.
Mine are lasting 2-3 days as they are getting a little gunky with the heat - I am using sillouettes which have a built in sticky bit!
Also, there has been a problem with the dressings on some of the sof-sets not sticking or disingtgrating when wet. I last had some delivered last year so not had the problem as I use the sillouettes most of the time.
Try a different tape if you can / have any - Mefix is good.
try different areas such as legs or even tops of arms if tum getting unusable!
Love
KAte
XX
x
My skin has flared up. I had been doing ok till the last couple of weeks then this week I have lovely little circles of red soreness any where it has been and thats after only 24 hours.
Bex try the cavilon on it before putting the soft set in. Im using double base cream which helps a as long as I apply every few hours. Its a moituriser but does help with inflamation to.
Wouldnt swap the sohilloettes now though as with the dressing size being so small I can at least move them about and give areas chance to recover.
Im off to a dermatologist end of next week as costa is really stuck with what to put on my skin when I am in. When I was in the other week the nurses were using their tornacays(sp?) to hold dressings on so it has got a bit dire.
I have used Flexipore which is a very thin sticky dressing for presure sores etc.
Might be worth asking about thin skin dressings that stick.
Can't think of any more .......
Double base ? that's the stuff that gloops around on the bottle??
Take care
Kate
XXX
Right now I am struggling to get sof-sets I have been calling the asthma nurse for over 10 dayy now but there is never any answer and my messages don't get responded to. I have tried paging but just get told to leave a phone number and she will call back. she has been seen so is not on holiday. I have my last sof-set in right now I can't even go back to useing needles as last time I had to do this I re-acted to tagiderm the only dressing I have here. My sof-set site is red and sore this morning, I am at my wits end, chest is just about hanging on in there but I have to stop my sub cut the results are not going to be pretty. I have 2 spare sof-sets I keep in London and they are being posted down next delivery tomorrow, I had hoped I could hang on till tuesday but it is not looking too hopeful.
Sorry to moan I know you should order sof-sets in advance but I called the wednesday after discharge from RBH when I still had 4 left, I thought that would be ample time.
Bex
Finally got hold of asthma nurse down here she only has a couple of spares (she had 3 new boxes last week, when I was calling daily hmmm) which she will leave at reception for me and will order me a box today. Resorted to butterlfy needle on upper arm last night (thanks to eldest son who bravely put it in for me I can't do needles on upper arm) and tagiderm which seems to be less of problem on the arm than the stomach although I note it is a little pink this morning. Someone is on on their way out to collect the sof-sets as I type phew....
Thanks to everyone who PM'd me offering to put a couple in the post, with the ones coming from London I should have enough to keep going until the new box arrives.
Bex
twistergirl, who do you see for your asthma (or where if you aren't willing ot say who). I am in aberdeen and now see prof ayres who has done most of the reseach into subcut, and after a rbh-like trial started me on it 18months ago - it has been great. i was in edinburgh before, and as kate says they are mega-against subcut, but then prof didn't believe in brittle asthma grrr.
i have been having problems with sites too, prof said he thought was the temperature - oh rats, I knew i was meant to do something else today, I should have phoned the ward.
oh and hi to everyone i knew from before - sorry to have been hiding, but the lungs have been much less grumpy (i even managed a whole week at camp without a neb!) Hope you are all not too poorly
sarah
becky G, t has just occurred to me that the terbutaline used in the pumps is usually terbutaline sulphate - which may be a problem if you can't have sulphates - it is probably woth checking that out.
s
Oh really? I didn't know that. I don't think that's why my cons won't give it to me 'cause as I say he seems completely against s/c, but it's worth knowing too that it may not be an option for me anyway due to the sulphate structure of it. I'm taking Bambuterol at the moment, which is supposed to break down into Turbutaline in the body and act in the same way as the s/c. I haven't noticed any hugely enormous improvement yet, except for during the nights, which I'm getting through more of before waking in a struggle. The other thing I'm going to point out to my cons when I see him on Thursday is that last week's attack wasn't quite as bad as others of recent years and for first time in a long time I didn't have to go to ITU. It may of course just be that I wasn't going to be as ill in that attack anyway, but I wonder too if the Bambuterol helped. There's still scope for an increase in dose (i.e. it can be doubled from where it is at the moment), and I'm going to talk to him about this on Thursday.
It's good to hear that s/c does work for lots of people because that's certainly not the impression I've been given by my cons. And yes Owl, I came across Prof Ayres name a lot when I was doing all the reading up about s/c. I don't know what'll happen with me but now that you say it's a sulphate it seems more likely that it would do harm than good. Disappointing but very very helpful to know. Thanks.
BeckyG you don't have to have terbutaline you can have salbutamol sub cut instead I don't think that has any sulphate in it but I am prepared to be corrected.
Bex
Oh gosh yes, of course! I knew that somewhere in my head but because my cons has only really spoken of turbutaline going through s/c that's what I've focussed on. Hmmmm, I wonder what his stance is on salbutamol s/c?? He can hardly deny salbutamol's effectiveness. Thanks for reminding me about that Bex.
Hi Becky,
Sorry to throw another spanner in the works for you, but unfortunately salbutamol is as salbutamol sulphate too according to my BNF. What do you use in your neb? The nebuliser solutions are salbutamol sulphate too, I can't see an alternative in the book.
When I used to go to Heartlands (when Prof Ayres was there) I believe some people used the terbutaline nebules subcut, rather than the intravenous solution, I think cos it was less irritant, but I'm pretty sure it's all still sulphate based.
I think I have the same problem with a preservative in some intravenous solutions, formaldehyde sodium bisulphite, which is in certain brands of hydrocortisone. It's also in both Epipens and Anapens, but I always reckon if it's got to Epipen stage I haven't got a lot to lose! Next step is to investigate dietary sulphites, which I'm not looking forward to as excluding them would be a major operation!
When did it all get so complicated?!
Hope you find an answer
Hugs
Em H
What sort of doses are people on? Sean was started on 5mg over 24 hours, last apt at Rbh Dr wilson suggested going up to 7.5mg if he unwell. Yesterday his PF went down to 50% so i upped it but last night his hands were shaking quite a lot. So today his PF much better on higher dose but he still shaky. I wasnt sure if it ok to turn up and down or if it meant to be tapered down or do I just settle in middle for 6mg?
Julie x
RBH seem to have a fairly standard 7.5mg over 24 hours, I don't know anyone esle who is under them who is on more some are on 5mg over 24 hours I think. I get the impression they don't like people going over the 7.5mg. I am on 7.5mg at that level is does it job with the early morning dips. I am still getting used to recognsing the altered signs of a splatt so although it would be tempting to ask if it could be upped I might end up not recognising an attack coming and get as bad as I was in June.
Bex
Julie
I am on quite a high dose anything up to 12mg but then I cant have steroids so in a different situation. I always ring and let asthma nurse or Gp know if i up it. I try to manage on 8mg other than through my worse time of year or bad infections. If I have put it up above 8mg I always try to get it back down as soon as possible to. What I am aware of is like Bex says it does a good job but can mask how bad things are so if you have someone at RBH to contact ring and let them know and see how long they are happy for you to continue at that dose.
I am glad it has helped which is a good sign and hopefully avoided a bad attack which is good for you both.
Thinking of you
Caroline
Thanks Bex and Caroline. I'm going to ring the Rbh nurse in morning and run through things with her. When the doc said to increase she was very casually saying you know how to turn it up just increase the rate on driver by half again and thats 7.5mg. It does all sort of make sense but he always been on 5mg and ive been so used to doing just one syringe every 24 hrs that now it running faster and he needing 1.5 syringe i need to double check im doing it right.
It would be positive if increase did see off a big splatt but if i could see him shaky so much on outside what was it doing on inside.
Sorry im rambling now, Sean away overnight and im sat here worrying about anything and everything.
Thanks
Julie x
Julie
You knwo you are great Mum and if you thought for one minute he wasnt well enough to have gone he would be sat there with you. Iadmire how much you try to let him lead a normal life. That isnt easy. I am sure you have done right as he is better than he was. Whenever I increased a dose in the beginnign it made me shake, now I only see the difference in my pf.
Hope you get some sleep tonight.
Caroline
hi Julie, I am on 6mg usually but up to 8mg for a while lately and occasionally more. When i asked if it was ok to put it up and down Prof Ayres said he was reluctant to let people change it cos they were likely to keep increasing it, but after a couple of admissions where I'd put it up before going in as a last resort, he now trusts me to be sensible - i just got back to 6mg after a long spell on more a couple of weeks back, and think it'll be going up again soon! I guess so long as when he is well for a bit you cut down and see how it goes it is ok. and numbers in between are fine - i often don't know a dose in mg just in mm/24h!
I'm being reckless and going to camp for the evening despite my grumpy lungs, so i think the terbutaline is going up tonight!
hope you got a proper answer from his asthma nurse
s
Julie, just a little advice or tip re the 7.5mg and needing 1.5 syringes a day. I do a 10ml ((5mg) syringe at about 11pm at night which takes me nicely though the night and then do the 5ml (2.5mg) syringe to run during the day. You might want to jiggle a little but I find it better have 16 hours (10ml) over night so if I should get 8 hours in bed I don't get bothered by the alarm and fasffing about with changing syringe when you are just woken up.
Bex
i use 20ml syringes so they last for 24h, it is much easier than changing twice a day i find. the pumps take them just the same
I understand RBH don't like you using the 20ml syringe, I can't think of any other reason for going with the 10ml only ones.
Bex
Thanks for the advice
Well I spoke To reg at Rbh who said I had done right thing and it's ok to just put down to 5mg and if he gets bad again turn back to 7.5 mg. I think now i've done it once I wont worry next time but the boundaries of normal doseage of his meds get pushed so far that sometimes I need to just clarify I'm doing the right thing.
Thanks bex for the syringe tip, came in useful
Thanks for the kind words Caroline
Julie x
its really odd that brompton don't like 20ml syringes - they mean you only need to fill it once a day, and it is the size the pumps were designed for (we use them lots at work, and have been looking at new ones, so been finding out lots about them lately!). On that note, there is a suggestion that the graseby pumps are to be phased out in a lot of places, because they don't meet new health and safety type guidelines. the only one that does is much bulkier unfortunately - we have been trialling it in the unit and they are a complete faff.
Glad you got someone to talk to Julie - it is reassuring to know that someone is there to answer questions even if just to check you are doin gthe right thing, isn't it?
s
yep we are very fortunate to have such a good medical team supporting us. Only snag is I tend to wobble at anti social hours so can't just pick up phone, well docs at rbh always say to ring at anytime but i always worry ill ring just as they get head down for hours sleep!
I really hope the graesby not phased out as Sean tends to sling his in pocket to go school,play footie etc. If a newer version is larger it would mean going back to the old u must wear this bumbag arguement with him protesting he looks an idiot.
In regards to 20ml syringe ive never seen one used at Rbh, nor has it been mentioned but i guess every hospital has own way of doing things.
Regards new s/c pumps .... I still have the good ol Graseby but some people here use one called the Chrono (See applied-medical.co.uk/ for pictures etc) which is smaller I think that the graseby. There are also some other pumps there very similar to the graseby but slimmed down a bit.
I started off using 20 mls syringes as I was on 7.5mg / 15mls of bricanyl at first, then went to 2 x 10 mls.
I now use 10ml most of the time as ventolin is 1mg in 1ml, I only use 20 mls if I need more than 10 mls of ventolin in 24 hrs.
I never have one syringe for more than 24 hrs anyway (if poss!) although I do load the full 10 mls even if on 7.5mls so there is some leeway and also If I need to prime a new line. (which I will be doing in a mo, cos my tumm is being a pain with the current needle & looks a little icky!)
After 12 years using s/c my consultant is happy for me to tweek between 7.5 and 10 although I do phone him if poss before putting it up to 12.5 or even 15 mg.
Julie, don't worry about phoning them at silly Hours - I have phoned my ward at
4 am etc! If it saves you going into hossie, phone. Take care.
Kate
XXX
the issue with the old graseby is that it isn't lockable - which isn't an issue if we are adjusting our own meds, but for some patients it is. The advice issued nationally about the pumps changed recently to include that they should be lockable so nobody could fiddle with them unauthorised. The one we tried which was least hassle was the mckinley one, but it was a little bigger than the old ones unfortunately. It was the only one that fully met the new requirements though. I suspect that other companies will start bringing in new pumps soon to compete, so hopefully they will be smaller. Unfortunatley our trust is moving to the mckinley cos we need to replace several grasebys and it is the only one tha tmeets safetly requirements.
I hope noone notices for a while in chest so I can keep my old graseby (which is only a year old anyway!)
s
I'm sure I have seen Grasebys in lockable cases over the last year or so - this H&S stuff explains why.....however the (clear perspex) cases I have seen are incredibly bulky and nowehere near as ""slimline"" as the Graseby on its own.
The graseby 1hrly is being phased out because of drug errors but the 24hrly is still ok.
Saying that my local havent caught up yet and i currently have hrly one from them which causes all kinds of probs with regional centre? how many times do they have to tell me its banned!! arghhhhhhh but cant get one off them as none spare at mo.
So have been looking myself and have managed to get £400 donation from my nurses union benevolent fund. I am looking at the chrono one? im sure a few use on here is it any good? for me just the size and the fact that its more accurate is enough?
Thanks
Andrea xxx
Oh dear. My pal's going to be in lumber - the 24 hour Graseby can't physically run fast enough for her subcut rate. Bums Does the Chrono run as fast as the 1-hr Graseby can?
Cath, if I am upping my rate I use a bigger syringe, normally I use a 10ml syringe but ATM I am using a 20 ml and I think there are some here who have used a 30ml lurelock. Of course you then need to adjust the rate not something you should do without guidence from your medical team.
Bex
Cath i think the 24hrly goes in mm like the hrly doesnt it? in that case ir will be the same. The chrono one runs in mls/hr so looks much easier as you can just draw up however much bricanyl your on then set the pump to that amount for 24hrs no need to measure and make up for mm rate, and you can get 10ml. 20mls, 30ml and 50ml? but like Bex says i would consult medical team loking after it.
Andrea xx
The 24-hour pump can only go up to 99mm/24hrs - my friend runs her hourly pump at 6mm/hr, so would need to set a 24hour pump to 144mm/hr. Hmmm.
They'll sort her out, I have no doubt - not worried at all, just will require some adjustments. And assumably, only when her current hourly Graseby conks out!!
Thanks guys, for the suggestions!
Hi guys,
I hadn't heard that the 1hourly pump was being withdrawn, and can't find anything about it - it may be something local to one region so your friend may be ok Cath. There are also electronic versions of both the hourly and 24 hourly ones being produced, which we trialled - again not suitable as couldn't be locked.
re rates - if you use a 20ml syringe can give 26ml/24h (which would be 13mg of terbutaline), you can use up to a 30ml syringe (I don't think you can use a 50ml but may be wrong) - not sure what volume it would give over 24h.
anyway, I'm still fighting the system to get some more sofsets and changing these silly intima things every day, so I'd better go and sort it out. I just hope that if I have to move I won't have too much trouble getting funding for the subcut again - it took about 6months the last time and I don't fancy 6months without at the start of a new job.
Yup, the 20ml syringe would do the trick, as Bex also suggested. My friend hadn't said anything about any problems with her pump, so you may be right, Owl. Good to have a heads-up about these things though.
Good luck with your funding battle - hoping you bash the bloomin' political administrators into pulp.
Andrea
I have a standard chrono which I have to say Andrea is excellent so much more reliable than the grasebys I was given and more portable.
With the chrono the largest syringe type they do is 20 ml so when im over that I just change the syringe at 12 hour interevals. You are right that you do not ned to measure as you key in how many ml over how many hours. You can buy a different pump which will take larger syringes but not sure if it is used for asthma. If you ring up AMT they are fantastic and very helpful and will advise you whats best for you especially if you are buying it yourself.
Also check about servicing as because mine is owned by PCT it is done by hospital but I am not sure if you will need to pay for it. AMT are a small company with a very good personal service.
It is easy to set up and a rep will come out and show you how to do it and dependant on your circumstances will show you at home.
Because my PCT funded it they decided that some staff on the chest ward should be trained so we had a session altogether as there is two patients with them they felt someone other than us who use it should have some idea .
I would never go back to the graseby as I had too many splatts when it went wrong. Plus I only have the use of one arm so it was too big to carry around.
thanks speedy, your right about the company beeing good, thye said they will give me abox of syringes free, if i do eventually get PCT funding they will then refund me!! they said if im not happy that i can have full refund within a mth and like you said a rep will come and show me how to use it. Think im defo going for it now am so fed up with greseby.
As for greasby must be a regional thing as like i said my local still use it as thats what they gave me but regional lung centre have banned it?
Thanks again
Andrea xxx
Andrea
Glad you got on ok. I still have a greasby on lone at home in case of emergencys ( never had to use it yet due to failure of chrono) and to be honest when I go into costa I take the graseby as not to risk my chrono getting damaged/lost/ dropped etc
You can stuff nearly 30mls in over 24 hrs - that is 15mg/30mls of Bric of 30mg/30ml of vent ( Alot of ventolin!)
You can put in a 20ml syringe any amount up to 50 mm in lenght then double the rate to run at eg 99mm then change syringe every 12 hrs.
Warning - don't try this unless speciffically told to by your Doctor!
I have never used a 1ml rate syringe - the 24hr ones are easy to calculate me thinks.
I did have a 12 hr one for a while which only took 10ml BD syringes as it had an inbuild set rate.
The Chronos look great but don't think I could get one as only use my s/c on an as & when basis.
Kate
Speedy how delicate are the Chrono's I am always chucking my grasby on the floor (not across the room in frustration honest) and it copes fine.
Bex
I dont think they are as robust in one way as the graesby but I have dropped mine a couple of times and it has been fine. I think cause its smaller you tend not to to drop it as much as it fits neatly into a mobile phone case so very portable. I havent had any toys out the pram as I did with the graseby. I think having used the graesby for several months it was fantastic to get something reliable and so small that I aprrecaited it so much.
Thanks for that info, I always wondered about that as you can imagine how many knocks and drops Sean's graesby has to take. This may sound like a silly question but if I was to apply to PCT for funding who do I need to approach first? Would it be like resp nurse or doc or do I go it alone?
Again sorry if if its been said but I get muddled with mm and rates... At the moment we following the Rbh protocol for 10mg daily which is .. 10mls neat drawn up in 20ml syringe and run at 63mm, changed every 12 hours. Would we still be able to get a 10mg dose with the chrono?
Thanks
Jx
Julie
Yes 20 ml is not a problem with the chrono and there would be no need to change the syringe. If you go higher then on the standard chrono it then would need changing every 12 hours.
How I got mine was my cons felt I should have one but it was the asthma nurse that filled in all the paperwork. I also insisted on putting my own letter with the file and my gp did a supporting letter as well. It went to the head of my home address PCT rather than the hospital one as the needles and syringes are supplied under my district nurses budget so it therefore came under home address PCT.
I think for you Julie I would ask RBH first if they are responsible for Seans subcut what they feel about a different pump. Then I am sure funding will come from local PCT so thats where you would apply.
hiya, anyone know how much the chrono costs? i am ok with the graseby but if there was something smaller.......well it would make life a lot easier.
rusty
This is a link to the standard chrono but for information on cost its best to ring and ask them
Hi guys, anyone any idea how much a box of sof sets actually costs - the ward are being useless again, this time have forgotten that funding was agreed and I've been waiting more than a week for sofsets- using silly bd intima things and changing them twice a day, my sites are a mess. thought I might buy some sof sets to tide me over the problem - anyone done this before?
I think, a few years ago, sof-sets were around £7 each. Try AMT, see Speedy's link below (knock off the cane crono bit) and give them a ring - they may be able to send you some samples!
Take care
Kate
xXX
Wow i have never heard of this, or seen it before. What is it really? is it used as an asthma choice for treatment? i am in canada so i dont think these are around here.
well, I reckon £75 is worth it for a box of 10 if they keep me at work - without the subcut I amn't able to hold down a job, and they can last me at least a couple of weeks each. I am cross that I've had to do it though - although I can aford to not everyone can so I will be fighting for funding for them. I see prof next wednesday so I will get him to negotiate funding again.
Amandana yes it is used in the UK and I think in North America too for brittle or difficult to control asthma- but only once pretty much everything else has been tried because it isn't a straigtforward treatment. Not many people are on it - I think most of the ones n the Uk probably post here!
I cant get funding from my PCT but have been lucky to get a grant from my nurses union benevolent fund so have ordered my chrono, cant wait get rid of this bulky gresaby and one thats accurate!!!!! its cost me £865 and they give you holders for it and a free box of syringes as you cant use normal ones with it worth £65!!
Andrea xxx
I'm surprised so many of you are having probs with graseby accuracy -I use one and we use lots at work and they have always seemed pretty reliable. I guess they are all serviced regularly and our med physics are pretty good. I'm hanging onto mine and hoping it doesn't get changed for a mckinley when the whole hosp changes over next year - they are much more bulky but safer because they can be locked if the patient is likely to fiddle with the dose - grrr
Owl, I have to agree I am very happy with my graseby it seems to cope with being dropped on the odd occasion (no I am not chucking it across the room in disgust honest) and if I need to change the dose (within guidelines) I can do so easily. My only gripe is the black band that seems to wear out easily I have resorted to a ""velcro"" cable tidy to make sure the syringe stays in the pump.
My biggest problem is the siting there are times when I sit there with the needle ready to insert and it takes all my courage to stick the damned thing in. It does hurt a bit when you first pierce the skin and I am a coward I have once or twice asked a nurse or a one of the kids to do it. When I was pregant with Josh I was a gestational diabetic injecting insluin and had a lot less trouble with finger pricks several times a day and 4 times a day injections that I do with re-siting my sof-sets for some reason.
Bex
Sarah its not so much the acurrency of the machine its the amount of fluid needed to get 15mls in 24hrs on the hourly one? as its in mm, have discussed on here b4 to complicated to explain now as brain mushed!! my regional is getting the mckinnley ones to, but im happy or will be when little chrono arrives!!
Andrea xxx
My problem was not such much the graesby pump although one definately was faulty but the syringes use to stick so often but for me the main reason I have the chrono is I have a disability which affects my left arm and also permanent damage to right shoulder so having something smaller and lighter was very important which is why I got funding for it.
No prob with 24hr graesby here, they seem to be fairly robust as you can imagine Seans takes a bit of a bashing. The black thing that holds syringe always snaps so we just use hairbands now.
I have looked into the chrono purely for size, every time i go Rbh i mean to ask opinion but always get sidetracked by other stuff when with con, is back on list for next opa
J x
Yeah got my new pump!!!! its fab so comact, neat and easy to use, well worth the money!!!!
Is there alot of size difference?? With a 20ml syringe wouldnt it be just as bulky as graesby? Sorry for being dim i know this has been discussed I guess im just trying to work out if its worth the battle with pct.
I think the chrono syringes are short, fat & squat! And nestle neatly into the chrono.
Kate
XXX
I'm not on the pump, but I think this is a relevant picture of the chrono pump with a larger syringe attached. it appears that they will even take a 50ml syringe..
Kates right julie and look at link carries sent, its shorter and stumpier and you remove the plunger bit so just the barrel if you gte what i mean? you need to see it to relise?
Andrea xxx
The best way to compare the size of a pump with syringe is its similar to the size of a mobile phone. If you have a phone that slides out or flips when its at full length thats about the pump length and width is about same as phone but depth is about 3-4cm. I use a mobile phone case to put mine in hence the comparison and that fits syringe as well.
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Which is your local costa I will make a note that I can go on holiday there as they are sensible enough to use IV Sal, I am slowly drawing up a list of costa's who won't use it.
Does the Chrono run as fast as the 1-hr Graseby can?
Sub Cut info needed
Sub cut terbutaline
