How many have managed to come off steroids.

joon51

Steroids for me have been absolutely fantastic as soon as a flare starts they are upped and flare gets under control

After being on them for a few months have started to reduce dose each time I do this I end up having to put them up again :!: :!:

I don't know much about this disease, but with this forum I am learning more and more. From what I have been reading it seems the majority/nearly all of us seem to be on pred :roll: :roll:

They certainly are for me a wonder drug, but my rheumy team seem to want me to get off them asap, I was wondering are there many who have come off them or is it a case we will always be on them :?: :?:

Will be seeing rheumy nurse and I know just know she will start lowering them again, am currently taking 7.5mg.


Take care all Junexx

salamander

hi June, I've been on them for over a year and can't get below 2mg. I'm currently on 7.5 again. Are you on other meds as well? My rheumy wants me off them too but had to put them up this week.
Have you tried reducing by 1mg a week? Sometimes that helps.

annie_mial

I do know of several people who have managed to stop taking them completely and a fair number of those who are on 'maintenance' doses of 1 or 2mg.

Not me, though, rising 9 years now of being on them and I do have some of the long-term side effects. I try to keep them down as much as possible as the medics tell me that once you are down to 5mg there are no discernable side effects. The body itself makes between 7.5 and 5mg of cortisol a day so once you are down that far it's a question of when your own adrenal system will kick in. It's often very reluctant to do so, hence the problems of reducing still further at that low dose.

I'm currently very hopeful of reducing to 2.5mg, but doubt that I will ever be off them entirely.

Annie

joon51

Hi Salamander, I have been on the steroids 6 months I also take 25mg mtx, I have noticed from your posts you have just started hydr rheumy doc has suggested that drug to me as a add on :? :?

Why did they take you off mtx :?: :?:


I have tried reducing steroids 1mg at a time, I have recently been in hospital having op on foot (nothing to do with arther), and as I was just getting over flare rheumy doc said to keep at 7.5 till after op, from what I have been reading it seems alot of us need to have a maintance dose of the pred :? :?


You will have to let me know how you get on with the hydro

Junexx

c4thyg

I have come off pred completely so it is possible. Although I did have to get through a nasty flare without them it was worth it for me. Pred didn't work for me below 40mg anyway and I wasn't going to stay on that long term. I tapered from 60mg over 6 months.

I also talk to ppl on the ITP forum (I also have ITP) and pred is prescribed A LOT for ITP and at doses exceeding 100mg. Even those who do not have arthritis get an arthritic type flare once they stop pred and have to ride it out. I expected this flare and just waited it out when I came off dread pred. So I guess the flare that many of us talk about might not be directly related to having arthur and simply a withdrawal effect from pred. I don't know if this helps at all.

annie_mial

I agree, Cathy. When I reduce I get steroid withdrawal symptoms which mimic a flare. I have learned to ride it out for a certain amount of time, usually three/four days and if I am still in pain after that time I go back to the original dose and try again a week later.

Annie

joon51

Thanx Cathy and Annie, you have gave me something too think about :idea: :idea:

I'm still quite new to all this, and I would never of thought of trying to ride the flare, so that bit of information I take on board and if need be will put into action next time 8) 8)

Take Care Junexx

salamander

joon51 wrote:

Hi Salamander, I have been on the steroids 6 months I also take 25mg mtx, I have noticed from your posts you have just started hydr rheumy doc has suggested that drug to me as a add on :? :?

Why did they take you off mtx :?: :?:


I have tried reducing steroids 1mg at a time, I have recently been in hospital having op on foot (nothing to do with arther), and as I was just getting over flare rheumy doc said to keep at 7.5 till after op, from what I have been reading it seems alot of us need to have a maintance dose of the pred :? :?


You will have to let me know how you get on with the hydro

Junexx

Hi June, I was taken of mtx because I got a very nasty chest infection that was hard to clear up. Had just started injections of 10mg. It was also not clear whether it was working that well for me. I was very reliant on steroid injections and oral pred. So a bit hard to say. Certainly wasn't that good on it though might be worse off it! I'll let you know about hydroxy. Only just started on it.