Steroids

[June24]

Been on steroids for over a year everyone I cut down to about 5mgs and it has taken me another 6 weeks lm now at 1mg but feel awful is this normal

[Watfordgirl]

Hello June,

Oh dear, you must feel pretty dreadful. Haven't you had problems like this before? I can't really help because I don't know but I have heard that it can be a problem.

I assume your GP has given you a reducing regime? I think I'd go back and talk it through and ask for some more help and guidance.

I'm sure someone who knows more about it will be along soon, but it might help if you could say in what ways you feel awful.

Good luck with it and look after yourself,

Love Sue xxx

[sassy59]

Hello June, sorry you feel poorly. Pete was told to reduce his steroids from 10mg to 5 but he is happier on 10 so that is where he is staying. Good idea to chat with your GP and say how you feel. Xxxx

[June24 in reply to sassy59]

I feel I've just got to get of them I have a moon face and really large steroid stomache it's that bad a neighbour never recognised me thank you for your reply

[O2Trees]

Hi June, I don't know what dose you were on over the year but the hardest part to reduce is the later stages. So its quite easy to go from 30 to 25, and like that down to around 15 or 10. Then it gets harder and takes longer. You don't say how long you've been at 1mg but Im assuming you've gone down 1mg at a time for around 6 weeks each? If you don't feel better make sure you go back to your GP. I can't say what's normal but it's bound to be very hard for your body to adjust after being on the things for a year. It could be that you need an ongoing low dose but only your doctor can say. Good luck

[June24 in reply to O2Trees]

I was on 40mgs and cutting down over months then get an infection about 9weeks ago and got put back to 30mgs new doctor told mentor cut them every week or so I went to 15 then 8 4 3 2 and now 1 it was only at one I felt more breathless thanks for your reply

[O2Trees in reply to June24]

Well I don't know your medical situation June, but I don't think my doctor would not be likely to have said to go from 8 to 4 - that seems a lot but maybe you were ok at that point. I think Ive always gone down by about 2 1/2 from 10 onwards to 5, then down by one's after that, right down to halves and quarters. There are so many different ways of weaning, different theories on how to do it, so if this isn't suiting you, go back and discuss an adjustment.

[hallentine47 in reply to June24]

I have COPD and Emphysema and I am 69 years old and stopped smoking on diagnosis 12 years ago. Over the past 5 years I have increasingly used Steroids various dosages at various times a little like yourself coming down then having to go back up due to infections. Last December I had viral pneumonia and spent 18 nights in Intensive care and a month in Hospital. I came out on 10 mg a day and told I would never be able to come off this dose for the est of my life. By summer I had reduced them to 8 1/2 mg a day but then caught an nasty infection in July and went back to 40 mg a day. It has taken me until now to reduce to 17 mg a day. Yes you might well feel awful on the low dose you are using. I would certainly be very poorly. The Adrenal gland stops working for ever after prolonged use of steroids. Take it easy and listen to what the body needs. For me long term use of steroids has proved horrifically damaging but when we cannot breath steroids become essential. Wishing you all the best.

[tbeth]

June24,

I'm in the process of tapering also. I'm tired of all of the side effects of steroids. I hope you start feeling better soon but best to check with the doctor if you don't.

tbeth

[June24 in reply to tbeth]

Thank-you for your reply down to one mg now a rough Road I'll give it another week and then go down to half a mg hope you are doing well 😍