prednisolone for chronic asthma

Hi I was wondering if anyone else could advise me on this topic, I have been on prednisolone for 32 years, the highest being 40mg. At the moment i am down to 9mg and feel awful, breathless all the time, tired, no energy, Ive tried to wean off them 1mg a month, but as soon as I come drop down, I am really wheezy, and breathless again, Has anybody else been on steroids for a long time and have managed to come off them completely cos I feel I am back to square 1! I know steroids are bad for you but Id rather have quality of life than quantity, and be able to breathe!

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do you have inhalers as well?

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You have my sympathies when it comes to pred reduction and the side effects. I understand where you are comming from when you say you would rather have quality of life and be able to breath. I have only been steroid dependent for a few years so no where near as long as you and I have not been able to come off steroid at the moment. Has your consultant tried you on any of the immunosurpressants or xolair to act as steroid sparing agents to help with the reductions?

[KateMoss]

Hello,

I have been on pred permanently for well over 10 years, now steroid dependent.

You may have found that you have reached your maintenance dose. 9mg is quite a good low dose.

Mine is 12.5mg I am currently on 20mg , weaning down from 40mg after a flare up / hosp admission.

After such as long time it may be difficult to come off them completely.

Ask about a test to see if your adrenal glands are still active, called something like a syncthacen test (?) and also other steroid sparing agents... though these may often have another set of side effects...

Hope this helps

Kate

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I have been on permanent pred for 23 years. I did get it down to 15mg once but I felt awful, so decided to go back to 20mg because like you I felt quality of life was more important. I have since had to up my maintance dose. Yes steriods have long term issues, but I need to breathe also, so if I have to live on increasing doses of pred so be it.

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I have been watching this post. I have type 1 Brittle asthma. My maintance dose has been 5mg prednisolone from april til october. When autumn came I went up to 4omg and following a chest xray found I had an infection too. I find self management very diffivult as I also have a chromosome disorder. I do have home nebulisers but my gp is trying to get me away from being reliant on them as I have reduced fine motor skills which means I cannot do the twisting action required to open a nebule or set up a nebuliser meaning to operate a nebuliser I would require 24 hour care from another human. This has created much stress and upset. I am not sure what the future holds accept determination. I know I am not popular on the boards which is why I rarely post but I felt I should reply on this thread.

Plumie

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Thank you all for taking the time to read my article, Yes Im on every Inhaler, Tablet, nebuliser that they can give me. Its no good Ive had to increase my steroids from 9mg to 30mg and already I can feel them kicking in, and Im able to breathe! I have asthma, since a young age but because of so many chest infections and so much scaring to my lungs it has developed into bronciectasus, in which theres lots of nasty stuff in my lungs thats hard to cough up.Im on home oxygen, and have to use oxygen for going out, which I hate because of all the stares as though youre from another planet! I do wish that everyone who has this nasty disease, will get through this, it can only make us stronger.

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I was reliant upon steroids for about 35 years and had all the usual side effects including muscle pain, sight problems, bruising, weight gain,oh my goodness the weight gain was the worst thing. After being seen by a different consultant and put on different inhalers and drugs I was able to gradually reduce the steroids to about 5mg a day over the period of about four years. I am now back to a reasonable weight an d size, and only need steroids when I have a serious attack or chest infections. Maybe I have been lucky being able to manage without continuous steroids, but unfortunately my daughter has very very severe asthma and is not coping reducing the steroids.