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

Hello! My rheumatologist diagnosed me with PMR in 2/2021. My primary had been keeping me on prednisone for 6 months prior until I could get in to see the specialist. My labs are completely normal. The symptoms I had were characteristic of PMR with the added problem of carpal tunnel in both hands. I am a very active 69 age woman, so once getting moving the morning, I did pretty well, but nights were "nightmarish". I am controlled today with methotrexate and 5.5 of prednisone, unable to taper any lower yet (pain is too bad to sleep). It's great to see the supportive posts of others. I am looking for diet solutions, and the only ones I see that I could improve is no alcohol, since I usually have a glass of wine with dinner.
Anyone else have PMR without the lab confirmation? And any other diet thoughts? Otherwise Merry Christmas and Happy Holidays.
Judy

Hi Judy, The pain and stiffness of PMR is usually worse in the morning. It supposedly gets better as the day progresses. My pain didn't ease up until 8:00 pm or so, then it was a somewhat bearable. I was not taking prednisone then. I just read about a study in which 100 mg of saffron a day decreased inflammation in people with rheumatoid arthritis. I think some were on prednisone and some weren't. You can check it out at http://www.examine.com if you're interested. As @kmeikle mentioned an anti-inflammatory diet is supposed to help. Dr. Andrew Weill offers a lot of information about the anti-inflammatory diet. He also recently posted about a study in which Vitamin D and fish oil or omega 3 fatty acid decreased incidences of participants developing autoimmune disorders. Fish rich in omega 3 fatty acids is a component of the anti-inflammatory diet, vegetables (eat the rainbow), whole grains, etc. Avoid processed foods. That was always how I ate, but prednisone was the only thing that worked to eliminate my pain.
Good luck and happy holidays!

Thank you, Teri- Like you, I thought I was eating well, and followed most suggestions. Indeed the prednisone made the biggest difference! I wonder how you are taking the saffron? I am game to try. I have been adding tumeric in the morning.
My stiffness never really lets up %100 but if I keep going, it' s bearable. What I find interesting is the connection between all of this and menopause. No, I don't want to back to pre-menopause, but the hormones (estrogen) seem to be connected. Thanks for writing to me. Judy

Hi Judy, PMR is a relatively rare autoimmune disease that effects 52.5 in 100,000 people. About 30% develop Giant Cell Arteritis, which I also have. These diseases mostly occur in people 50 and older and the likelihood increases with age. Women get PMR at twice the rate men do, and there are genetic markers. The highest incidences of PMR and GCA are in Scandanavian countries. Carpal tunnel syndrome can also occur in patients with PMR (This info from Cecil and Goldman's Textbook of Medicine, Chapter on GCA and PMR). My background is mostly Soutern European, and for a disease that is relativey rare, my aunt and mother-in-law both had it.
I found saffron capsules - 88 mg - at Swanson Vitamins on line. On a scale of 1-10, the pain and stiffness of my PMR was a 10, something I will never forget. It got better after nine or ten months, but then, I got other weird symptoms, which were Giant Cell Arteritis. When I had PMR I still managed a daily walk and I couldn't understand how I could walk for so long and still feel so stiff, especially the backs of my knees. A doctor friend pointed out that I couldn't get blood flow to the area because the PMR was attacking my veins!
I think we are so lucky to have prednisone and other drugs to manage these diseases, despite their drawbacks.
Wishing you the best, Teri

An anti-inflammatory diet is supposed to help. I regularly have a glass of wine at night and don't notice a difference when I don't. Once you are on prednisone, you're labs will be normal and 15-20% of people have normal labs even before beginning treatment. You were just diagnosed in February...that's a pretty rapid taper. I hope you are reasonably comfortable as you should be before you taper again. If so, you may be one of the fortunate ones who beats the average 5.9 years before remission.

Thank you, Teri- I read about genetics and PMR; I am English and Scottish. As far as I know, no other members of my family have PMR. I will see about the Saffron suggestion. I have the "back of the knees" stiffness and pain, and it gets pretty bad if I sit at my desk at work. Since I am new to these discussions, it's the first time I have heard about someone having the stiffness as I do. I am sorry you got the Giant Cell Arteritis, which doesn't sound like fun. May you get to complete remission (me, too). Grateful for the medications that help. Merry Christmas, Judy

Thanks for this group. I’ve had PMR almost 5 years. Initially it was quite painful but the prednisone calmed that. My confusion is that I am on a maintenance dose of 3 mgs and have no pain. But my CRP and Sed rates are way too high. About 38 on the CRP. What makes my markers continue so high? I will now try giving up sugar and low carbs.