re Polymyalgia Rheumatica

Has anyone been prescribed prednislone and then been able to get off it?

How did you get off it and how long did it take?

[wobblybee Administrator Pioneer]

🤔 I was prescribed it short term for an eye condition.

[Jonesburger]

Hi, I used it to treat a severe face rash that was a side affect from Afinitor. The dermatologist prescribed one pill per day for 6 days. It helped a lot. Both my Oncologist and Dermatologist didn’t want me on it for too long because I’m told its a corticosteroid and can weaken bones. I have bone mets so I didn’t want to be on it for too long either. I had no trouble getting off if it. My rash still comes and goes but I still haven’t taken any prednisone since the last 6 pills.

[Hidden in reply to Jonesburger]

Thanks for your reply. i wonder if it was easier for you because you'd only been on it a few days; also, not dealing with intense pain from severe inflammation which only seems to reduce with prednislone. And when body relies on it to keep inflammation down and therefore less pain so it can function, if anyone takes it for some time, such as months or years, have to reduce very slowly to allow body to adapt

[Jonesburger in reply to Hidden]

Yes, I’ve heard that if you’re on it for a while, your body becomes reliant on it so you have to get off slowly..can’t just stop cold turkey. Good luck. I hope you find something that can be just as good as prednislone.

[Hidden in reply to Jonesburger]

Thanks! I've read a bit about low dose naltrexone and still looking for a doctor who will prescribe it

[Michaelelfin]

Yes, I started on prednisolone 40mg daily for a month or so, then reduced the dosage by 5mg a month. Symptoms improved immediately (I think I had an IM dose to get started). After a couple of months I was virtually symptom free When it got down to 10mg, I reduced it my 1mg a month. All the while I also took omeprazole because of the gastric bleeding risk associated with steroids. I also carried a steroid card with my current dose on it.

I had no problems slowing down and stopping the steroid. The therapy finished over three years ago and I have had no recurrence (although my doctor told me that a substantial percentage of patients do get a recurrence within a year or so of stopping treatment.

I do still have a slightly stiff hip and knee but this does not get worse even on long walks - it's just a dull ache that I can easily cope with.

Even now, I find hot weather and hot baths give me the best day!