Im going to be having a trial of this next week and have a couple of qs if you can help me please?
Did you have a blind trial? If so, did you find anxiety about it being a last resort affected your symptoms at all?
What happened with your other medications? Im on bambuterol which I know will be stopped if subcut helps and need to cut pred, but what about the rest?
Did it affect your heart rate significantly?
How hard is it to get used to?
Im sure Ill have more, but thanks in advance!
Anyone?
Hello Sparkly,
I have been using s/c bronchodilators ( both terbutaline and salbutamol) since 1994.
I was put on s/c terbutaline initially at my local hosp though my cons has always looked at what was done at the Brompton etc.
I was put straight on the actual stuff as I was at the end of a long string of long admissions in a bit to help me stay at home longer.
It did work and worked OK for a few years, though I still needed admissions. etc.
I changed to salbutamol as I was having needle site issues, less volume and less cramps too.... I weened off it after a few years as I was getting too much and it was affecting my heart.
I now control at home when to start or stop it. It reduced the number of nebs needed and helped me manage a bit more, though the last few months have been a bit rough but glad of other support.
Sadly I am steroid dependent so, although I can reduce pred, I can't come off it .... though still hope one day if my adrenals aren't knackered.
They now do the double blind trials to see if it does work as with some people it doesn't help ... so please don't be too disappointed if it doesn't.
Yes it can affect your HR... mine can be a resting rate of 90-110 when on it... going to try to ween down a bit this weekend if I can.
Needles, ask if you can put them in ASAP after they have shown you how to do it... then you will get use to it...
Good luck!
Kate
Thanks for the reply. I really have my hopes pinned on it and its making me quite anxious. They are hoping to get my pred down to 10mg but would settle for 15mg (currently fall apart below 30mg). From what you say, I suppose they would cut the bambuterol, keep the rest and hopefully gradually reduce the salbutamol nebs (currently 2.5mg 2hrly during day and as required at night).
Im not remotely worried about doing the needles myself - my mum is diabetic and Ive watched her inject for years...
...and having used epipens on occasion I know those needles are massive compared to the subcut ones!!!
So I guess its a case of not expecting miracles, but another medication to add to the mix to help make life more manageable.
Thanks again, I may well have more questions yet.
Hi I only started on sub cut terbutaline a few months ago so by no means an expert but I'll help if I can.
I was put straight on to it with no blind trial as funding had taken so long-went in for the day & they gave the first lot under supervision & went through how to set everything up. it effected my heart rate during this period, but after an ECG they were happy & sent me home. I have a higher 'normal' heart rate of 110-120 but nothing that really bothers me. I get a few cramps but these reduced over time.
started in a lower dose to check tolerance and then increased.
Mine is not done using a syringe driver but a clever little infusion device that infuses over a week & is then thrown away after 7 days, I use sof set needles & the only problem I have had so far is non-sticking tape when we had the really hot periods & even that got sorted in the end. much of it is personal choice & trial/ error. my needle sets stay in for around 4-6 days but will depend on your skin & you will seen get to know when they need changing etc.
I'm surprised how well I've taken to it all & it's just part of life.
medication wise everything else for me stayed the same & I have so far been able to reduce maintenance pred from 30 to 17.5 so much touching wood this continues.
sorry for the waffle and hope that helps.
Theres no waffle there at all, just helpful info, so thank you!
Im suprised Ive not had to push harder for this than I have, I was prepared to have to fight so am even more keen to have it work becuase its being offered so easily, if that makes sense?
What are the needles like? Does a metal needle stay in you or is it more like the plastic in a canula? How big is the device and what do you do with it? ie does i tuck into underwear or have a little pouch etc?
Glad the waffle helped helped-I know I wanted to find out all I could before getting started.
The sof sets are put in using a metal introducer needle and then this comes out leaving in the soft flexible cannula (when I first showed my friends what it all was they said think drawing pin as to how it goes in) but again this varies depending on hospital & what's funded/ what you get on with as there are lots of different types. Luckily I ve got on fine with the first type tried.
The device as strange as this sounds think tennis ball shape size at the start and then as it infuses over the week it gets much smaller and is then almost flat, no batteries/ no beeping -I think it's quite a new thing or it is for my consultant I'm the first to try it & get funding in place for terbutaline this way (I think they use it more in oncology type setting) . I personally think its great as I can tuck it in my trouser band, pocket or i do have a little carry pouch/ straight in the handbag- any excuse to buy a new handbag naturally!!! The only time it needs to be unhooked so to speak is for swimming (not tried swimming yet to be honest) but even then the needle can stay in place and reconnect when done. Shower/ bath I just pop outside the shower/ bath in a plastic bag to protect from splashes etc. I was surprised how quickly I got used to it all.
They did warn me it doesn't work for everyone but after my bronchoscopy/ tests etc they were fairly sure it was worth giving it a go/ more likely to be positive in my case based on their previous experience with using sub cut.
I can't comment on syringe drivers I'm afraid but I'm sure someone else will be able to give you more details about those 
Wow, it all sounds really interesting and not at all scary tbh. Im so hopeful its going to work - bambuterol did make a difference, just not enough so I do think theres a good chance. Nurse said today they wish theyd known when I first came in I was going to try it as another patient had it who could have shown me but theyve gone home now. I thunk there are 2 from this team but Id be the first for my 'lovely cons' if it works.
Hello,
I use currently a Graseby MS26 24 hr syringe driver which is obsolete in most places now ( too easy to alter the rate but that suits me well for home management.
Either the Cane Crono or Mckinley syringe drivers are now uses in most places. I have heard of the weekly infusion device but never seen one.
Needles - I use the sillouette sofsets, they go in 45 degrees unlike the ordinary sofsets which go in at 90 and look like a drawing pin!
Both come with disconectors on.
They are very thin and you withdraw the metal needle bit and it leaves behind a bit of plastic tubing in the skin, just like a venflon except it is in a bit of subcutaneous fat.
Here are some links to help..... applied-medical.co.uk/produ...
The sets I use are here applied-medical.co.uk/silho...
Ordinary sof sets.... applied-medical.co.uk/sofse...
Cane crono pumps applied-medical.co.uk/canec...
Mckinley pump cmemedical.co.uk/t34/#.UkL8...
The old graseby Pumps .... smiths-medical.com/plugins/...
Hope this all helps!
Kate
Thanks for all the links, its helpful to have an idea of what Im in for! Annoyingly, trial is delayed due to delay in broncoscopy results so Im feeling a tad fed up, but at least I can do some reading up now, thank you.
May I ask what dosage youre on over a 24hr period? Did you start on that dose or was it gradually increased?
Hello Sparkly
I was started on 7.5mg (15mls) of Bricanyl (terbutaline 0.5mg/1mg solution) and used that OK for a few months, then used 10mg (20mls) over 24 hrs and had gone up to 15mg in extreme circumstances... All neat, no dilution.... Varied doses as to what I needed..
I now use IV ventolin solution instead of Bricanyl as I get less side effects and it is 1mg/1ml so half volume needed for infusion all neat and not diluted
I use 7.5mg to 10mg now when needed.... been struggling a bit this week after stopping it at the weekend... 5-6 days after reducing theophylines.... Hummm!!!
What pump have they given you? And what is the starting dose?
Kate
x
1mg by the looks of it which seems very low??
Thats in 8ml saline I think. For the trial its a big clumsy syringedrive but Ive been assured I'd go home on something far more compact! Also have actual needle in me not plastic so its a little sore but not too bad.
I started on 5mg then moved to 7.5mg, which is my current dose but was told there is room to increase by a fair bit depending on how things are going.
If you are on a double blind test, then they should not be putting on the labels what is in the syringe... just a code perhaps?
1mg... that is hardly anything...
Have you felt any difference between the two batches?
Kate
Contrary to what I was initially told, its not double blind - the drs and nurses all know, and today they realised I know they know! Im fairly sure Ive noticed a difference, but in being much worse today than yesterday rather than a big improvement at any point. 48hrs to go, but will probably be Thursday before Im told the results. Coping okay with it, got it in my thigh now and much more comfy than my tummy.
Treatment has started - yay! But with the big hospital syringe drive which is a bit annoying. Im on 2mg terb in 8ml dextrose solution, so 10ml in all. The site is comfortable enough (thigh) but its leaking a little extremely watery blood. Have you had this problem at all? Could it be because Im still using butterfly needles at present until they sort out my kit? Theres no pain or even soreness, its just a bit of a nuisense!
Sorry, another question too please.
What areas do you use for it, and are there some that work better for you than others? For the trial I started in my tummy but found it quite sore so moved to my thigh. I used my thigh again for the first day of actual treatment but knocked it and it bled, the skin also became a bit raised (diluted to 10mls, feels quite a lot of liquid??). So Im now on day 3 of having it in the very top of my tummy just below braline, its bruised but not sore. Any other suggestions pls?
Sub Cut sites.
Tummy is the main one... from knicker line upwards, not tried below bra line before... not ideal really!
Thighs - tops - usually OK in some people, I can't use thighs because of stretch marks , lack of absorbency and also bruising, leaking pooling of the meds...
Top of arms - grab the squidgy bit - I use this area
top of chest... not ideal but works if you get it right. Use the 45 degree needles here if you don't have much s/c layer...
Also one friend uses the love handles around the side of her hips, I can't because of ... stretchmarks...
When you get the proper infusion sets that will help greatly.
Not suprised your tum, top half hurts as it is moving all the time...
and why o why are they using the solid buterflies these days when there are nicer needles available even if just for temp use!
Hope this helps
Kate
PS... Is that 10mls neat or diluted? Is that over 12 or 24 hrs?
Thank you!
Its 10mls diluted (still only 2mg terbutaline as want to inc slowly due to high heart rate).
I asked today about when I will get my own kit and they havent even spoken to pharmacy yet! Frustrated as I need to be aloud to be independant, esp when the nurse this morning was pushing me to hurry but Im still just trying to get the hang of it! Yes, Ill be glad to be rid of the butterfly needles, they feel too long as much as anything else.
Hi
I find these discussions interesting as everyone is so different & yet I do pick up some new things to try!
I find the best place for mine are pretty much anywhere below the belly button / knicker line line if that makes sense - above that I find is less comfy & seems to irritate/ not stay in so long. Mind you with mine it also means I can just tuck everything nicely including the device under my trouser band if I keep them lower. I swap left side to right side and this gives me the best site rotation to allow them to heal in between.
I've tried my thighs but they just don't stay in. Lasted about an hour last time I tried lol
Haven't tried the arms but now I might be tempted
I'd agree it will be much easier with the proper sets & I appear to have been really lucky to avoid those metal needles! I also appear to be lucky as I've never had a problem with leaking sets or bleeding. This made a nice change normally if anything can go wrong I'm your one & it will.
My sites only seem to feel a bit sore when I remove them but someone said to me if you think about it a certain amount if skin healing will go on whilst they are in & if you disturb/ remove them your disturbing that little bit of skin healing - I thought that made a bit of logical sense really.
Kate, its interesting you say you cant use certain areas due to stretch marks. Would cellulite cause similar problems? While I found the thigh comfortable, I did get the skin swelling and leaking (is this what you mean by pooling?) although there was no pain.
Just seen my cons and team and theyre starting to get things organised for me to go home next Monday. As she hasnt had anyone on subcut for years she admitted shes out of touch with the 'stuff' for it. So based on what Ive been told here Ive asked for 45ºsof sets. I hope thats a good choice but I guess we can always try something else if I dont get on with it. Anythings got to be better than these butterfly needles!
Hello,
Not sure about cellulite.
regarding pooling and tissuing of the meds under the skin, this is mainly a problem with my legs etc even when the stretch marks are not near...
Steroids can also cause problems with the skin. Pooling and tissuing of the meds under the skin can lead to leaking making it all a bit soggy. Basically the s/c layer of fat doesn't absorb.
Are you being put on neat terbutaline or is it still being diluted? Neat should be fine.... it is a faff to start fiddling with both terbutaline ampoules and saline ones as well.
It is Sof-set Sillouettes that are the 45 degree ones I use.
Ordinary Sof-sets or Sof-set QR are 90 degree ones but still much better that butterflies with metal needles.
Have they told you what infusion pump you will have?
I noticed you said they were probably increasing from a low dose. I went straight on to 7.5mg/ 15mls over 24 hrs straight off as I was on IV ventolin. I was ending up on IV ventolin for too long and using s/c was a way to get me home.... rarely have IV ventolin now, I used to end up on 60mls (10mg in 5ooml saline) over 24 hrs which was a huge dose. Prefer IV aminophylline now.
I use s/c ventolin though because of the volume issues.
Kate
After much discussion with pharmacy (who wanted my now 3mg dose to be diluted up to 30ml) my team and myself Im now being given it neat and we will see how it goes. I really felt the difference being without it about 5hrs while this was being sorted, and noticed the improvement again after an hour or so. Dont know yet which pump, will ask the team again tomorrow if theyve arranged it, there was too much to talk about today to go into too much detail.
Having it neat has reduced the volume from 41ml/hr to 27ml/hr which will obviously increase as the dose increases. The plan is to get it to a level where I only need salbutamol nebs when Im unwell rather than every few hours every day, my cons agrees its silly to have the subcut and still be using nebs so regularly when it can be increased.
That should be 0.27 and 0.41ml.
Do you have to use the district nurses or does your hospital/GP provide the stuff and any necessary care? Its turning into a complete pain with the DN for me - aside from not getting the pump or sofsets I was promised, they also want to see me at least weekly so they can 'support' me! I told them I have no desire to be 'supported' (aka patronised), just want the right bits and bobs and then to be left alone! And no, I didnt use those exact words, I was fairly nice to them, but felt wound up.
dizzydog - do you know the name of the infusion sets you use? No one here seems to have heard of them! Thanks.
Hi I use the Medtronic sof set ultimate QR (the needles & come with the choice of 2 transparent/ waterproof dressings). The actual infusion device is called an eclipse.
District nurses this was the problem I had with getting sub cut in the first place- due to a change in policy my trusts district nurses would have nothing to do with it/ me as it was unlicensed!! and syringe drivers were like gold dust & they wouldn't lend one/ give them up.
Therefore mines been contracted out to the care company that make / supply the infusion device. It's like having a repeat prescription I request what I need & it gets sent out on a regular basis. (I don't see the logistics of it as the care company liase directly with the hospital in terms of prescriptions etc) They are excellent & it works well.
In terms of support the care company have a 24hr support telephone line (I've not had to use this yet) or I can contact my consultant/ hospital nurse. My GP doesn't want to get involved so unless urgent would refer back to the hospital although I was told this was likely to be the case with any form of sub cut.
Funding is from the hospital under a special case basis. It took ages to sort& so many policy/ hurdles but bless them they got it sorted for me in the end and it's all been new to us all.
Hope that helps, whilst it took so long to get in the first place I know I'm really lucky with what has been put in place compared to how it used to be done.
Lou
Thanks, thats helpful. What a funny looking thing! I think for now Im better not to confuse things by introducing the option of a completely different device, but its certainly interesting to see. Reminds me of the bouys between Portsmouth and the IOW where I used to live, hee hee!
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