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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, Just discovered this group. I am starting my 3rd bout with PMR. The first bout came when I was 57. At that time, I couldn’t figure out what was happening and it was a bit frightening. I tried stretching, etc. When I saw my primary care MD, I had classic symptoms, high sed rate and was diagnosed and started on Pred that day. The rheumatologist thought I would be on the Pred for 6 weeks, but it took 2 years to get off it. I had immediate symptom relief. Then I went until age 70 when symptoms started up again. This time, I started Pred earlier and came off it in 10 months (last January). I think I weaned off too soon. This last bout started in November this year (2019) and I started Pred 3 weeks ago. My sed rate was at the top of normal and the CRP was elevated. The unusual thing this time was that I injured a knee in May gardening. I nursed it along with PT, elevation, icing, etc. it was pretty good, but reinjured in September. In October, I saw an ortho who took off 60 cc’s of fluid and gave me a cortisone shot. That night, I slept longer than I had in years and woke up pain-free. This was good for 3 weeks, then PMR symptoms developed quickly. (I wonder if I had some PMR treated with the cortisone, then rapid withdrawal helped bring out symptoms). The main side effect from prednisone was increased pressure in eye, so I became a glaucoma risk. I also was diagnosed with leukopenia at the same time as the PMR 12 years ago. This has persisted, but causes no problems. I am interested in how long folks are on Pred, how they taper, and any concurrent problems. I try to stay as active as possible, not hard with 4 grandkids. I have always taken the Pred at bedtime, it helps me sleep and I am a morning person,
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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?