I'm currently under a consultant who doesn't believe that S/C is a treatment option which actually works. Unfortunately he can't come up with an alternative, except from pred, which actually helps. So his plan is to just leave me on long term prednisolone, which I'm not happy about! If there is another option, I want to try it!
I was wondering which hospital you are under if you are on it, and at what point they decided to add it in. Did you have a trial?
I am waiting to be seen at another hospital in Birmingham - but they are booking for appointments next April at the moment, so obviously there isn't going to be anything from there any time soon!
Ive been on it nearly 2mths. My cons wasnt keen at first but after a whole series of tests showed that the inflammation was controlled, I was given meds to suppress stomach acid etc and was still on hrly nebs I was given a trial during my 6wk admission. Just as trial ended my cons started her mths ward rounds so seeing Id had good results she agreed to let me have it. Its not a miracle cure and at present Im back on almost hrly nebs with nasty infection but its made a big difference.
Do you mind me asking which hospital you are cared for by?
Im under Hammersmith in London, theyre fantastic (except for the A&E which in my experience is hopeless but is set to close soon!). The whole resp team are great, and resp ward staff are exceptional. I know some have had trouble getting funding for subcut but there was no question for me - it worked for me when the cocktail of 20 drugs wasnt so Ive got it. Still a nightmare with having a huge pump and not ideal dressings etc, but the main thing is I have the drug. Im my cons only patient on it at the mo.
Hi,
My consultant Proff doesn't like it either as he says it is old fashioned , which it is, and we should all be able to be managed using long acting drugs like formeterol
As it is as good!,. I have been on s/c nearly 20 years, but seeing him he convicted me it was a security blanket and encouraged me to come off it. I did but was not so well so told him I was back on it, he doesn't like it but accepts it allows me to be the active person I am.
I still meet drs who have either never heard of it or say its old fashioned but never told I shouldn't be on it.
I was originally put on it at the Brittle asthma unit at Heartlands in Birmingham.
I'm under Hammersmith although live in the south east. I have been on s/c turbutaline for about 5years now and can't do without it. Agree with sparkly that the respiratory team are all fabulous!
Oooh Asthmachick, are you under Prof I by any chance? Also, what pump have you got? And who arranged/funded it please? Having awful trouble getting a more sensibly sized one! Thanks.
Hi Sparkly, Yes under Prof I. The pump I have is McKinley T34 which isn't too bad but eats batteries! I use rechargeable ones as it is cheaper for me to do that then to change them every 2 days. I went through my GP surgery after I borrowed one from Hammersmith for a month. The GP got the District Nurses to give me one initially (although had it for 3 years!), which they now longer do, but when that gave up he put a case to the PCT as was then to get me the McKinley although I didnt get any choice. I have had this one for about two years now but when they changed them over I also got some new giving sets which were a lot better than the butterfly needles I was using before. These are like little venflons so once you have put it in then you take out the needle far more confortable! They even do an inserter pen thingy to shoot it in which is great for me as I am seriously needle phobic!!
Random q asthmachick but by southeast do you mean Essex? I know Hammersmith only have about 4 of us on subcut at present, and have just found out that one of the others is a friend of friends, so wondering if that might be you??!!
No not me I am in Kent. I am coming up to Hammersmith more and more because my local hospital are so useless!!! I am going to have to come in again soon as I need a new central line mine has stopped working again! I hope things are going better for you.
Asthmachick x
Ah okay. When are you next in? If Im still here, pop and say hello!
There is a lot of debate about use of s/c bronchodilators at the moment... it works but long term effects can be a problem, such as absorption, tolerance, cardiac side effects.
I use my s/c ventolin as and when needed to help prevent me going into hospital where possible.
I am in Essex BTW....
Use one of the old Graseby MS26 syringe drivers.
I have two of them, they are being phased out so they let me have two so if one goes wrong, I have a back up.
Community and hosp have gone over to McKinleys..... bit bigger that the grasebys. Mine are working fine at the moment but very basic settings....
I have been using sub cut Bricanyl for about seven years now, it is considered old fashioned, I originally prescribed it under the care of Royal Brompton, but they don't like prescribing it these days. They use the McKinleys, but I got my GP to apply to my local PCT for a syringe driver because London is too far to travel when things go wrong. So I use a Crono Pump which is tiny in comparison to the McKinley. I like Kate Moss only use mine on need basis as opposed to 24 hours 7 days a week now. So if my asthma is bad, or I am going to be active then it helps me to achieve daily tasks. Using sub cut constantly does cause problems, mine was my heart rate, it got too high, plus years of use has also causing it to become less effective, so hence only using it now when really necessary. I have also tried different methods of delivery, and over the years have developed lots of scar tissue in the delivery areas making it difficult to find new sites that work.
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Useless GP's. I don't trust them anymore with managing my asthma and health!
Continuous Subcutaneous Terbutaline
I have stopped taking steroid and terbutaline inhalers - here's how
