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Conflict with Rheumatologist over taking Prednisone for PMR in AM/PM
Polymyalgia Rheumatica (PMR) | Last Active: May 29 1:26pm | Replies (56)Comment receiving replies
@dadcue I understand the two dose strategy but I was concerned at the first post’s comment about multiple times across the day. I guess I was lucky as I started on 15mg in the morning then one month later 10mg and so on for 12 months with the last month being 1mg. I’ve been free for 3 years but I don’t think the immune system ever fully recovers. Stiffness has gone this year so I feel quite normal.
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@cazwell50
You must have done something right.
A+ for doing it the textbook way and being off prednisone in 1 year. I have read that people who are more likely to relapse are the people who don't receive medical guidance. On the other hand, I don't think I did anything wrong because I tried all kinds of ways and it took me 12 years with medical guidance to get off prednisone. What amazed me the most was how I could taper off prednisone in one year after Actemra was started. I have been off prednisone for almost 6 years without any relapses. I feel much better even though technically I still have PMR.
I think the number of PMR relapses which people have while on prednisone is the main problem with prednisone. The "failure rate" while doing prednisone tapers is truly astonishing. The only recommendation for relapes is to take more prednisone and try a slower taper. In my way of thinking that only guarantees people will be on prednisone for a long time especially when a slower taper also ends in a relapse. Being on prednisone for years is the last thing doctors and patients should want. Long-term use of prednisone suppressed my adrenal glands, making my body extremely sensitive to even tiny cortisol drops was mostly the problem that I had.
It has taken me a long time to recover from my long term prednisone use too.