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I keep relapsing when I try to get off prednisone
Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (64)Comment receiving replies
I've been on Prednisone for about 18 months and managed to taper down to 6.5 but then had a huge flare. The highest I had been on was 15 mg daily but I had to go up to 20 to get the flare under control. I'm back down to 12.5 now and crossing fingers. My rheumie told me that if I could get down to 4 mg I could stay there from then on and it wouldn't hurt me plus my horrible side effects would go away.
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The 7 mg barrier is hard to get past. I had problems at that dose of prednisone too.
My rheumatologist said 3 mg would be acceptable and that dose would be "relatively safe" and wouldn't cause too many problems. I needed to stay on 3 mg for six months until my cortisol level improved before I allowed to taper off prednisone.
My PMR symptoms have been well controlled but the side effects of long term prednisone use took years to improve. Don't expect the side effects of long term prednisone use to go away too soon.
After I got off prednisone there were side effects of long term prednisone use that I didn't know I had. Those side effects were discovered by my endocrinologist. Metabolic side effects sometimes never get better according to my endocrinologist. I'm working on the metabolic problems with lifestyle changes. Diet and exercise are very important. At least I have the energy now to exercise more.
It takes a long time to make a complete recovery. Things do improve over time. I have been completely off Prednisone for 3 years. I still have room for improvement. I still see a rheumatologist. I'm still being treated for PMR and other rheumatology problems.