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Has anyone with PMR been able to get off prednisolone?

Posted by gippy @gippy, Mar 6 3:46pm

I am wondering if anyone has been able to taper to 0mg of prednisolone. I was diagnosed with PMR in June 2025 after 5 months of enduring very severe symptoms put down to post viral body aches. After changing my GP, I was immediately referred to a rheumatologist.
I began on 15mg, then 12.5mg, 10mg and have been tapering by 1 mg each month.
I am currently on 2mg. Feeling pretty good, a few minor aches but have been working with a physiotherapist and now able to do a gentle gym program, swim and walk regularly. I work full time.
My rheumatologist has advised to taper to 1 mg in a month and then stay on that for the rest of my life (I’m 63) to avoid a relapse. He said about 50% of patients relapse on 0mg.
My preference would be to try to get off prednisolone completely (and hopefully be one of the 50% who don’t relapse).
So would be very interested to know about the experience of others.
Thanks.

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amandasmith007 | @amandasmith007 | Mar 24 11:39am
In reply to @thereselefever "I had been on prednisone for over two years. Every time I tapered, I had more..." + (show)
Profile picture for thereselefever @thereselefever

I had been on prednisone for over two years. Every time I tapered, I had more pain.
A couple of months ago I had a terrible stomach bug. I couldn’t keep anything down for four days. No good or medication. So I didn’t take it. My body seemed completely purged, but I noticed, as sick as I was, I was not having the pan I usually experience. So I did not go back to the prednisone. (I was on 2 mg).
I found I do still need pregabalin for nerve issues, but I believe the prednisone was actually causing some of the pain I was experiencing. I can’t prove it, but I am not going back to it.

From being on this site I notice folks rarely have just the PMR that they are treating. Some have bad osteoarthritis, myself included, some have restless leg syndrome, I am finding that is me too. Some have eye issues. Etc. it is difficult to tell, when on Prednisone, what is what.

I do not plan to go back on this drug. Yet I know that if my horrid symptoms that landed me on it in the first place return, I will have to. But for a very short period. I think it masks other problems that might be better treated by something less harmful to the body.

I have already noticed a change in my skin. I don’t feel like I look as old. And I am sleeping better.

Every body is different, but I am delighted I had that stomach bug.

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@thereselefever this is a very interesting read. I am on 4mg and was planning on staying on 2mg for a while if I could get down to that, but you have made some valid points that I had also thought about.

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