Continuous Subcutaneous Terbutaline

I am due to start a trial of subcutaneous Terbutaline on Wednesday and would welcome some info about this. I have looked online and found some papers etc, but nothing much about it from a patient's perspective. The centre I go to will be providing the pump, meds, syringes etc. so I shouldn't have to worry about supply, but I don't really know anything else about what to expect. If it is going to work, how quickly will it work, what does it feel like, what else should i know?

Any info would be gratefully received!

18 Replies

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  • Hello Val,

    There are quite a few message threads in the archives, I will bump them up in a mo.

    I started on S/C Terbutaline back in 1994, I now use Ventolin instead.

    I didn't do a trial as such that many people do nowadays, but was put on it after a long admissions with difficulties coming off IV ventolin.

    First off, get them to let you put the s/c needles in with a bit of instruction. this will give you confidence with doing it at home. There are a variety of needles around these days. I started with butterfly needles - metal! The most often used needles these days are called sof-sets and are similar to venflons in that they have a metal inserter needle and leave behind a soft plastic tubing.

    see this website for more info on needles.

    applied-medical.co.uk/dispo...

    tinyurl.com/3mdyj9j

    Syringe drivers - there are three main ones around at the mo.

    Graseby - being phased out in some areas (I have a graseby)

    McKInleys - new ones with digital displays & beeps!

    Chrono pumps - have their own syringes and are small!

    With the trial, you may be given the terbutaline or a placebo? There are others here who could advise.

    Also, s/c works for some people and not others so please don't pin all your hopes on it in case it doesn't work.

    If it does, you will soon get used to setting it all up, it is second nature to me!

    Hope this helps... will now find the old s/c posts to bump!

    Kate

    xxx

  • Have bumped up some posts, the 'Syringe Drivers - s/c Bricanyl / Ventolin' will probably be the most useful one as I started it as a place for all s/c info....

    Other peeps here, s/c infusions are used as a last resort for people who have severe / brittle asthma , have multiple hospital admissions (HDU, ITU), have exhaused all other meds incl steroids, nebs etc. It is usually only set up by specialists chest consultants often in regional centres.

    Kate

  • Thanks Kate, I will get reading. I think they are just going to give me the Terbutaline as this is really a last resort. I have had so much time off work that I think work is becoming unsustainable unless things improve. I have been on Kenalog injections since November, but they won't let me continue on those for very much longer. Personally I would love to come off the steroids as I am getting too many side effects, but it is so much of a double edged sword as they really make a difference. Sorry to ramble!

  • I have been on subcut turbutaline for 2 and a half years. Its worked wonders for me, my life now to what it used to be is so much different. I am hoping to come off it soon as my asthma has improved so much. I am currently on 10mgs over 24 hours. I get a few side effects mainly tremor like you do with lots of nebs and sometimes a bit tachycardic.

    Erm can't think of much else hope the bumped up topics help :)

    Clare

  • UPDATE

    I went to the hospital on Wednesday and got all my subcut paraphernalia. I was shown how to set it all up etc and away I went. The nurse said to me that it would not be life changing, but people did find it helpful. Its too early to tell yet how it is all going to pan out but my initial reaction is wow this is amazing!!! For the first time in two years I have had two consecutive peak flow readings in the ""green zone"". In fact my peak flow has been in the green every time I have taken it since Wednesday evening. I have been able to walk up the stairs instead of hauling myself up by the bannister. I have been able to move around a bit quicker and the impact on the whole family has been great. There were lots of yells (like the darts scores) at the dinner table yesterday of FOUR HUNDRED AND EIGHTY (my peak flow!!) and lots of laughter. If that's not life changing I don't know what is.

    I think it is going to take a bit of getting used to the whole process, but so far so good.

    When I first saw the pump I was really shocked how big it was (a McKinley T34) especially in the lockbox and the carry case is a bit of a suitcase (no way was I going to go to work with that attached!!) I was due to go to work the next day and it was too late to go shopping afterwards so after a bit of cupboard rummaging I found an old handbag and managed yesterday with that under my top, but it got tangled up with my trousers every time I went to the loo and in the car got in the way of the handbrake. I have since got a rather naff bumbag which the pump fits into (minus the lockbox) which is a bit better, but tomorrow I will have to go looking for something more tasteful.

    The only problem I have had is with leakage. I am using medtronic quicksets and as far as I can tell I am inserting them ok, but they have leaked after less than 24 hours. Today I was working in a clinic so I was able to scrounge some large dressing tape to cover up. Any suggestions?

    Finally thanks for the responses to my original post.

  • I am glad the subcut is working for you and that you are enjoy peakflowing readings in the green! Hopefully you will soon be used to the equipment... and have fashionable accessories for them....

  • I am glad the subcut is working for you and that you are enjoy peakflowing readings in the green! Hopefully you will soon be used to the equipment... and have fashionable accessories for them....

  • I am glad the subcut is working for you and that you are enjoy peakflowing readings in the green! Hopefully you will soon be used to the equipment... and have fashionable accessories for them....

  • Hi Val,

    Glad the s/c is helping! rgearding leaking, the needles you have are like drawing pins from what I remember? Perhaps the needle is a bit short to absorb properly? Ask for softsets as the needle tubing goes deeper plus is more flexible that the quicksets..

    regarding the pump, I got used to mine fairly quickly. I have lots of small bags made on the sewing machine with a velcro top, belt loops and it goes on trouser / skirt belt or on an elastic belt unde clothes (uniform if St John) out the way. You could try a Money belt if they are big enough for the McKinleys? I use a Graseby with no cover.....

    Hope this hellps

    Kate

  • Hi Kate

    Looking back over previous posts I think maybe I just dislodged the needle through bending etc. and on the first day I caught it a few times. When I put the last one in I stuck a couple of those transparent dressing things over it and this time it hasn't leaked. I have been a bit more careful and am remembering its there and not catching it. The quick set I have is 9mm so I think it should be ok. I was wondering how often people changed their sites as I was told at the hospital to change it once a week, but the manufacturers details say every 3 days. I can't personally see it lasting a whole week, but we shall see!

    I have been busy sewing today and have cannibalised a bag I found in the sale which I liked but was too big. I also found a neoprene travel organiser which is nice and soft and will be good for night time. A bit of a weird colour, but hopefully not too many people will be seeing it. I did try just putting the pump at the side of the bed the first night I had it, but the tubing isn't very long so every time I turned over in bed I had to wake up and move the pump so I didn't yank it out!

    Best Wishes

    Val

  • Hi Val,

    Glad you have got the sewing machine out to make bags! Have fun (I have quite a collection now!)

    A week is way too long for most people. 3 days is good, though I have had them last around a week, but then some days only 24 hrs.... depends on the site, the state of your skin, absorbtion etc.

    9mm is plenty of depth. I often used to put extra tape on some sets, and often do now when it is warm (sweat doesn't help) or if my skin is a bit dry.... tends to peel off!

    You will be amazed at where you can stuff your pump! Neat bags and elastic belts = under trousers , thouhg not tight jeans! Have had them behind me when abseiling!

    Kate

  • Hi Kate

    I finished bag number 1, but I was not too keen on the results so I think that one will be chalked up to experience! I was hoping to be able to hide the pump, but I don't think I am going to be able to as most of my excess weight is around my middle so any extra there under clothes just adds it. I think for bag number two I wll try to hang the pump vertically from a belt or elastic. I get the feeling that I will end up with quite a collection of bags before I am satisfied. The luminous pink neoprene organiser worked well overnight though as it is soft and squishy so was reasonably comfortable.

    The quick set I have in at the moment seems to be holding up better, It has been there since Friday evening, but I still think a week will be too long.

    Best Wishes

    Val

  • My bags are virtually all vertical with the syringe end pointing up.

    Glad you are getting used to it.

    I also use pockets in Cargo trousers if at home. Just be aware to tuck the line away so it doesn't catch.

    I also have a knitted bag that I use it bed at the mo with a long loop on to pop over shoulder when I hop out to the loo, can't carry it and use crutches..... It lives in the knitted bag at night now.

  • Hi Val

    Glad to see the pump has helped improve things for you. Ive been on mine nearly 6 years and it has made a huge difference to my life.

    Like Kate i also have many bags that fit pump in with syringe up and have velcro on bk to go over belt loop.

    However since being bridesmaid 4yrs ag and wanting to hide the pump under my dress came up with idea of a tubi grip on my shin(thigh size tubi grip) and havent looked bk and no one would ever know i have it on under trousers!!

    I pull the tubi grip on up to knee then place pump on shin of leg syringe on top facing up (no cover) then pull tubi grip bk over top of pump an tuck wire in and holds it perfectly in place and very comfy. Take it off on an eve.

    I have also made similar to out on thigh under skirts by using stretchy soft dressing that are used as a knee support for injuries and it holds pump perfectly in place on inside of thigh under skirt as velcros together.

    Hope you continue to improve on it and adjust to managing it, like Kate mine is just second nature to me now!

    Take care

    Sarah

  • Thank you Sarah I will get some tubigrip and give it a try. Just out of interest, what sort of pump do you have?

  • Hi All

    Sorry if I hijacking the thread. I'va asked my consultant several times about continuos s/c - I'm brittle asthmatic and at the end of the ""lets try"" line!. My consultant won't consider it he sats the guy Prof... what ever his name is who first came up with the idea now does not recommend it :-(

    I've looked at lots of research on it and can't find anything current to fight back with- all I can find is the original stuff from years ago. The current stuff supports his thinking of it's not worth trying as the side effects- namely skin leasons and abcesses - are worse than the effects of the infusion.

    Which centers do you all go to??? Which consultants do you see?? perhaps I could get a referal or write to a consultant who still prescribes it

    Thanks

    Truly x x x

  • Hi Truly

    I'm not in your area I live in Bournemouth and see a consultant in Portsmouth.

  • halerholder.co.uk

    The above lady is making my syringe driver bag, also makes inhaler and spacer holders. Lovely cheerful fabrics to choose from. My Syringe Driver bag will be for a MS26 and will cost £9.99 plus postage, might seem costly to some people but from what I can see on line it will be worth every penny.

    Yes Sub Cut might be going out of fashion with some doctors, but I am glad I had the opportunity to use it, my life much improved, and now only use it when life with the Asthma is pants. Of course hiccups like the odd accesses, might occur, but generally if I weight up the hiccups with the good points, the hiccups are just that hiccups.

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