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PMR Anyone?

Polymyalgia Rheumatica (PMR) | Last Active: Nov 1, 2021 | Replies (219)

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@susanski

I’m in the same boat you’re in. I’m 65 and last year I began with excruciating pain in both biceps. I had no idea what could be wrong. Saw family doctor who did the bloodwork. Sent me to Rheumatologist who feels it’s PMR. I’ve been on prednisone now for over 1-1/2 years. 30 mg all the way down to 1 mg.
I don’t feel pain in legs or hips until recently. May be due to prednisone for so long? I can only guess. I’ve almost weened off prednisone last May, however I had rotator tear surgery in May which through me back to 4 mg prednisone.
I’m still not convinced I have PMR as my bloodwork hasn’t been out of range for a long time. I just want to stop taking prednisone. I now have high blood pressure as well as weight gain.
I’m a mess and feel depressed with all of this in the last 2 years ( close to it anyway).

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Replies to "I’m in the same boat you’re in. I’m 65 and last year I began with excruciating..."

Hi @susanski -- Welcome to Connect. The pain from PMR can be excruciating and I too was pretty depressed the first time around. I've had two occurrences of PMR. The first one lasted a little over 3 years before I was able to taper off of prednisone and it was an up and down battle most of the way. I also gained a lot of weight, can't remember the exact amount but it was close to 50 lbs. The second time around was 6 years after I tapered off of prednisone for the first occurrence of PMR. I was able to keep the weight down to 5 to 10 lbs only because I knew I had to change eating habits so that I didn't gain the extra weight.

Each of us I think are a little different when it comes to the way PMR affects us but one thing that helped me was to make some diet changes. I didn't always adhere to the diet but did my best and tried to do some mild exercise but not too much each day if possible.

Here's some information that may be helpful.
Medical News Today - What to eat if you have polymyalgia rheumatica
-- https://www.medicalnewstoday.com/articles/321683.php

I don't think the prednisone will cause pain in the legs but then I have no medical background or training. My rheumatologist explained PMR to me as arthritis all over the body. When I was first diagnosed I had to use a walker going to the appointment and was unable to drive. My legs were in pain as well as arms, hands and shoulders. I was put on 20 mg prednisone after the appointment with the rheumy in the morning and went back for an afternoon appointment and didn't need the walker. So it was the miracle drug for me.

Has your doctor or rheumatologist given you any suggestions to help with the high blood pressure or new symptoms of leg pain?

I have been on prednisone for three years--I am sorry to say. My PMR included neck, shoulders, biceps, hips, and thighs before a diagnosis was made. I, too, was initially treated with a 30 mg dosage of prednisone. Like, John, my response to the prednisone was a miracle. I was pain free within four or five hours. By the time I had tapered to about 10 mg, the symptoms began returning. I recognized the symptoms for what they were. My doctor, however, thought the PMR was in remission because all of the lab work was normal. This cycle lasted for a year and until I was taking 1 mg of prednisone daily.

In desperation, I went to the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% of the patients will have normal lab work. I began taking prednisone again, and the pain went away.

While I am not a medical professional, the fact that pain is now in your hips and legs suggests that you are in a PMR flair. You might explore this with your physician.

FYI, I hate prednisone's side-effects. For me mobility and quality of life have been important enough to continue the prednisone and fight the side effects. I think I have had every side-effect prednisone has to offer. It is no fun. This decision is, of course, an individual and personal decision.

Good luck to you as you seek a solution to your health problem.