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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 1 hour ago | Replies (85)Comment receiving replies
@jeff97 @dadcue my rheumatologist is very positive and made me reassured today. His plan is 15mg for one week, the. 12.5mg for one week and then down to 10 for one month and then hopefully take it down 1mg every 2 weeks or so. Does that seem sensible to you ? I asked about the adrenal gland today and he said there’s no hard and fast rule about when that fully fires up again but can already start even on a low dose of Pred. He also advised that riding my the bike would be beneficial within reason and to stay as active as I feel comfortable with. Staying optimistic and realistic !! Thanks for connecting
Replies to "@jeff97 @dadcue my rheumatologist is very positive and made me reassured today. His plan is 15mg..."
@martyn That seems pretty aggressive to me. My taper was pretty similar to your plan, except I was on 15 and 12.5 for 2 weeks, and then on 10 for 4 weeks, and then taper 1 mg every 2 weeks down to 5. But the difference between us is that I had already been on Actemra for several months before I got to 15. So my PMR and GCA were under control by the Actemra, and I just needed to taper off of prednisone gradually to avoid adrenal and prednisone withdrawal problems. My rheumatologist only had me step down in either 2 or 4 week blocks.
Maybe your rheumatologist's plan will work ok. Hopefully you can taper slowly enough that you don't overshoot your lowest effective dose by a big margin and have a bad flare. I think you should plan on being on prednisone for at least a year or two, so you need to find lowest dose that controls your symptoms and stay there for an extended time.
People vary in how much discomfort they are willing to put up with. My symptoms were totally controlled, but that was important since I have GCA and PMR. Some people with PMR prefer a lower dose of prednisone and accept some level of continuing PMR symptoms.
It's good your doctor supports your cycling. Like I said, I was active all during my illness and treatment, and it made the experience much easier to bear.
@martyn
Your body will let you know how sensible it is. If you have initial increase in pain at a decrease, give it a few days to see if it subsides. If it does, then you're okay. If it doesn't, then listen to your body.
@martyn I like that plan of tapering. If I had to do it all over, I would have started with a bare minimum (certainly not 40mg, more like 15mg/day) and added to it if necessary rather than start with a lot and guess taper down.
Keep us up to date on you progress. It will be helpful.
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@martyn
Sounds sensible to me. I hope the plan works well for you.
There isn't any single correct way that works for everyone. There are many ways that are tried but research has shown there is no method of tapering off prednisone that works for everyone. The taper you do should be individualized to you.
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The adrenal problem comes into play later on. Things might become more complicated if you flare at 7 mg or so but maybe that won't happen.