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Confused about PMR symptoms

Polymyalgia Rheumatica (PMR) | Last Active: Mar 19 7:21pm | Replies (34)

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@lungranger77

Hello.
I remember having all the same symptoms. I was diagnosed Feb. of this year. Started at 20mg and had to stay there for two months. Then 15mg for another month f/w 10mg for the next month. The following months were weaned by 1mg/month. Flare up in September took me up to 15mg for ten days then back to 10 mg where I'm at right now. What I just described was the only way my pain could be kept to a tolerable minimum with mostly pain free days.
The main thing that I wanted to mention is that it seems to me, and others have mentioned this as well, that our prednisone can be weaned too quickly. I Think this should be a topic of discussion with our doctor visits. I have several questions and concerns that I'll be bringing up. I'm 71 now and reasonably used to normal arthritic, age related changes. I seem to be getting into a balance knowing where the boundaries are for potential flare up. My worst enemy is getting too cold and staying there too long. As patients I believe we can have more control and collaboration with the recommended care plan. This web site along with reading articles on PMR have definitely helped me see how important patient education is.
I'll also be asking my doctor if I can stay on 10mg thru winter and the continue the 1mg/month weaning plan. I was down to 5mg when I had the flare up from rapid change to cold weather. And one more thing, I would like more control over is when I can't be in contact with my doc in a timely manner that I can be able to make certain decisions about the next step with my prednisone because it could prevent
extended periods of increased pain.
Wish you the best.

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Replies to "Hello. I remember having all the same symptoms. I was diagnosed Feb. of this year. Started..."

I have been on a PMR journey for almost 1 1/2 years. I like (and consult) this Mayo Clinic site. Another site that has been helpful is healthunlocked.com/PMRGCAuk — a British site with a lot of members who have or had PMR and GCA. The main posters on that site are NOT doctors, so their suggestions are not medical advice, but they are experienced about PMR. They advocate a slow taper of prednisone. A rule of thumb often mentioned is not to taper more than 10% of your current dose. So, for 15 mg, the maximum taper would be 1.5 mg, and you might spend 3-4 weeks there before lowering again. I am not trying to give medical advice, but this approach has worked well for me so far. Everyone’s PMR journey is a little different. I wish you the best on yours.