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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
Hi @virginiaj, welcome to Mayo Clinic Connect. Your story is similar to mine except I had fluid removed from my right knee at the same time my first occurrence of PMR occurred. It took me 3 years to taper off off prednisone. The last six months or so I was going back and forth between 1 mg and 1/2 mg dose until I was finally able to be off of prednisone. The PMR came back 6 years later and it took me about 1-1/2 years to taper off of prednisone which was almost 2 years ago. I think the tapering went easier the second time around because I wasn't afraid to try different dosages. I think each of us are different. My rheumatologist was very helpful in giving me suggestions on tapering. I started at 20 mg for both occurrences and was able to get the prednisone in 5 mg, 2-1/2 mg and 1 mg tabs. I used a monthly taper the first time around with PMR until the last six months then I switched to weekly. If the pain was too bad when I tapered, I went back to a lower dosage than the previous dosage for 2 days to see if I could still get by with a lower dose than the previous one. The second occurrence of PMR I used a weekly taper after the first couple of months and it worked for me.
I've always taken the prednisone in the morning when I get up and I'm also a morning person. If it helps to take it at night, I think that's a great plan. Sleep is definitely what the body needs to recover. The only side effect I had with the prednisone was the weight gain. I gained around 60+ lbs the first time around with PMR. The second time I was conscious of the weight gain and was able to keep it between 5 and 10 lbs. I had my right knee replaced last April and had a cortisone shot the year before. I don't think it had any impact on my PMR which is still in remission
I did make a few lifestyle changes to help with the PMR - better eating habits and diet, more exercise as I was more sedentary the past 5 years or so. Have you made any lifestyle changes or had any side effects with the prednisone?
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Thanks for the information. With my first bout at age 57, I was able to continue with my regular exercise program, which consisted of walking 3 miles with a friend 2 times a week, going to an aerobics class 3 times a week, occasional Zumba or fun walks. The rheumatologist cautioned me to not use weights over a pound due to risk of tendinitis. I did get tendinitis in my right arm/shoulder, etc twice due to carrying heavy things, treated with rest, PT and acupuncture. I also got elevated pressures in my eyes from the prednisone, which made me a glaucoma risk. The pressures went down after I was off prednisone. I also have leukopenia, low white cells and saw a hematologist. He did a bone marrow showing that I am making enough white cells , but some are destroyed. He felt this was linked to the PMR, but the rheumatologist didn’t think so. This has persisted, but causes no problems, my primary just does a lab twice a year to see if it stabile. About 5 years ago, my husband and I retired and moved from Wisconsin to Minneapolis to be closer to kids and grandkids. I was fortunate in that my primary care MD moved as well, so I was able to continue with her. When the PMR returned 2 years ago, I didn’t see a rheumatologist, just continued with her. Now that I have a third bout, she prescribed the Pred for me, but wants me to see a rheumatologist again, which I will at the end of January. Hopefully, it will be one who listens to me. I can’t do the amount of exercise at 72 (73 next month) that I could at 57, but I do go to a senior exercise class 2 times a week and do some walking. Of course, I am also trying to avoid reinjuring the knee. I monitor my weight (I worked as a RND) and have been able to prevent gain. I think this is because my Pred dose is fairly low and I take it at night so am hungry at breakfast (a good time to be hungry) rather than mid-afternoon (not a good time to have the munchies). I am thinking of Tai Chi. I have thought of water exercise, but the Y’s, etc are quite expensive for monthly membership. I eat healthy, use oils that tend to be anti-inflammatory, but don’t follow a strict anti-inflammatory diet.