Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

My journey with PMR began shortly after my 65th birthday and my 5th haircut. I shouldn’t think that either of these was traumatic but I was under a lot of stress and my diet was mostly carbs and sugar. I woke up one morning in mid-June and the pain I felt in my thighs and shoulders was frightening. As the days went on, it became more difficult to function. I made an appointment with my Primary Dr for July 11. He did a complete blood panel that came back with elevated ESR. He did not do labs for C-reactor, so all I was going by was the ESR. He put me on a 9 day course of Prednisone, 40mg for 3 days, 20mg for 3 days, 10mg for 3 days, then cold turkey. I went back on Aug 11 for more bloodwork and the ESR number had quadrupled and the C-reactor was off the charts high. He recommended that I see a Rheumatologist for future treatment.
At the beginning, after the initial 9 days of Prednisone, I was adamant that I never wanted to take that again. It was awful on my stomach, on my sleep, on my being uncomfortable and sweaty. I knew instinctively that I needed to do as much research as possible. When I mentioned to my Dr after the first blood test, whether I might have PMR he said I was to young and nothing else would indicate that I had it. He followed up with chest X-ray and another blood panel. That’s when he handed me off to a rheumatologist. First visit with rheumatologist was short and sweet. Either I take Prednisone or I could cause irreparable damage to myself. That didn’t sound very good so I started on 15 mg per day for one month. More blood work. Numbers came down drastically but still out of range. Second month and the taper has begun. 12.5 per day and this is manageable. I sweat like a pig at night. I have terrible insomnia. My hair is coming out. I am achy at times. I unimaginably have eliminated sugar from my diet. I am on a semi-Keto diet.
I can move now without the excruciating pain I felt back in June/July. Life is good and I am upbeat. I have PMR, I have Scottish ancestry, and my name is Annie. Hello in here.

It was very helpful - thank you. I didn't know about melatonin... I agree that Prednisone is not perfect - far from it - but I think about my life without it, which would be intolerable, so I also have to be grateful. I, too, have osteoporosis (advanced), so that scares me but if nothing else, maybe I am buying some quality of life before my skeleton crumbles... I feel fortunate that I am still able to work out and do weight-bearing exercises and try every day to remind myself that lots of people have worse problems than mine. Thank you so much for your time and wisdom. I am so happy I found this group of wonderful, supportive, knowledgeable people.

I do not want to live with the disability that PMR causes. I have the side effects that prednisone causes. I am 77 years old and want to live an acceptable quality of life. Prednisone enables that. I have changed my diet to low sugar and carbs. I drink lots of water and lowered my caffeine. I take Omeprazole before taking prednisone. I take calcium and D3 for my bones and I take magnesium at bedtime. Without prednisone I would be a depressed cripple.

Since I have Crohn's (45yrs) and PMR I have had plenty of pred. And when you need it only it will help. I have found ways to cope with some of the side effects. At higher doses, the restless legs are a real bummer. I use elastic bands to excercise my legs until they are really tired. Then I can rest. As for the moon face, well, I'm glad for the masks we have been wearing. My optothamologist has been doing handsprings trying to keep sight in my right eye. Fat deposits, yup, I've got a few. I have to convince new docs that it isn't my thyroid. (Labs say not.) I'm convinced that the recent brush with breast cancer is because the pred told my body to ignore abnormal cells. (Found it early thanks to routein screenings so don't put yours off.) So does prednisone complicate your life? You bet but it is better than the alternative.

I am 77. I have had restless legs since I was a freshman in college. A doctor had me put lotion or vaseline on my calves and tightly wrap my calves with saran plastic wrap. The pressure helps. I also have to stretch my calves a lot. My restless legs are worse if I sit too much. So with this PMR my restless legs have been terrible. Both the wrap and stretching and less caffeine help. A few years ago one of my college roommates asked if I still wrapped my legs with saran wrap and the answer was "Yes"!

My hair did thin too, but I think that started with PMR. Anyway, it's thicker now. Dr. Loren Fishman has a yoga program that increases bone density and there is a version for osteoporosis. It's free on YouTube, "12 Poses vs Osteoporosis" if you want to check it out.
Take care.

I am 77. I have had restless legs since I was a freshman in college. A doctor had me put lotion or vaseline on my calves and tightly wrap my calves with saran plastic wrap. The pressure helps. I also have to stretch my calves a lot. My restless legs are worse if I sit too much. So with this PMR my restless legs have been terrible. Both the wrap and stretching and less caffeine help. A few years ago one of my college roommates asked if I still wrapped my legs with saran wrap and the answer was "Yes"!

I agree my energy increased at first with prednisone, but now my energy level is very low and my heart rate is very low also. I probably need to talk to my doctor about prednisone and any impact on my heart rhythm. I am on 2.5mgs and have been since April of this year.
Thoughts?