Asthma Consultants

Hi I have been living with brittle asthma since 1996. I have been on a syringe driver using Bricanyl from then until now, 18 years in total,

also with using steroids and different drugs to keep it under

control.

So after 18 years my new consultant at my local hospital has told me in his opinion It doesn't work so I have to go into hospital under a controlled environment and be weaned off it within a week. I have refused but he has threatened to stopped my supply of drugs to do with the syringe driver and all the things that go with it.

My question is he correct

This consultant over the past 18months has also asked me reduce steroids 15mg to 10mg by cutting out 1mg each week.

I got down to 12mg but on doing this I became very disorientated I kept on stumbling to the floor to which I received several cuts and bruises. I then returned back to 15gm.

Then he got me to do the same again this time 1mg per month

My wife took photo's of the cuts and bruises this time ,they have take a long time to heal.

So why should I be made to supper this because of HIS. OPINION

[KateMoss]

Hello!

I too was put on s/c bricanyl back in 1994, it made a huge difference to my life, I also changed to Ventolin as I had a few issues with Bricanyl.

Your body can become tolerant to the bricanyl and you may need more and more other meds in the end to help. I found this, needed so much IVs when not well.

I have a guide as to how much to use. I was weaned off it a few years ago and now use it as and when. (It can knacker your heart if you use too much bronchodilators...)

We weaned down on IV ventolin over a week after an admission, bit by bit, in the end down to 5mls of IV an hour from 60 I think.... to be honest I may as well had stopped at 10mls....

It may be worth a try....

Being on the lowest amount of meds you can that keep you OK ( or what I call a steady state of instability) means you have more room to increase meds at home when needed and meds may work faster at lower doses. Before I was on s/c I was in hospital on IV ventolin for weeks on end. It helped keep me home.

My protocol at the moment is to increase nebs to 2 hrly, up the pred and then if nebs not lasting as long, start the s/c for a week or so... However if I need another neb straight away, I need to be in hosp... eg if 5mg worth of ventolin neb don't work...

15mg pred isn't too bad a dose to cope with... but 7.5 - 5mg is a good maintenance dose which reduces most of the side effects without compromising your adrenal glands. Perhaps take it down even slower? It may be that 15mg is your maintenance dose.

Back in the 1990s syringe drivers were the in thing... they are rarely issued these days for severe asthma but sometimes it is the only thing that works....

I am currently strugging a bit on nebs with this weather, I stopped my s/c last weekend as I felt so rubbish with the side effects. tachycardia and missed beats... not nice at all. And that was after being on it for 3-4 weeks with little issues...

I would discuss your concerns with your consultant, give it a go, after all you will be in a safe place.

Kate

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