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

Thank you for responding to my message. I too am finding that exercise and yoga are not giving me any relief. I have no aches in my legs when sleeping or sitting down but when I get up to walk I have immediate stiffness in my knees and then lower inside legs. My rheumatologist feels it’s not related to the PMR as my CRP results are in the normal range. She continues to taper my prednisone medication. I’m on 6 mg at present and will continue for this month. Not sure what my next step should be?

Hi @tricialynn, I would have a heart to heart discussion with your rheumatologist on the tapering. Each of us are different and the CRP may or may not be relevant for deciding when to taper down. I was always told to listen to my body and keep a daily pain log and what dose I was at so that when tapering if the pain was worse the next day I could go back to the previous dose or possible go back at 1/2 of the dose dropped for the taper. There is some information on the topic in this article --- Polymyalgia rheumatica: An updated review: https://www.ccjm.org/content/87/9/549

You might also want to join in the follow discussion and read what other members have shared.
-- Prednisone tapering and remission: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/

Hi @tricialynn, I agree with @johnbishop re it's time to have a chat with your doctor. The chapter on PMR and GCA in Cecil and Goldman's textbook of medicine has a flowchart which starts with Elderly patient, PMR Symptom: If no elervated sedimentation rate or CRP, it suggests "consider diagnostic trial of corticosteroids prednisone 15 -20 mg... If dramatic clinical response, "treat as PMR; taper corticosteroids to the lowest dose that adequately controls symptoms." I remember how stiff and sore my legs were before starting prednisone. I felt like the Tin Man in the Wizard of Oz. I hope you get some relief soon.

I have had PMR for a year now, and am down to 3mg. of prednisone. I am tapering down at 1/2 mg per month. Does anyone else notice a heavy feeling in their legs while tapering? I don't really have pain, just a very heavy feeling in my legs when I get up to walk and move around after sitting for a while. After I get going the feeling starts to lessen, but it feels like a heavy weight on my shoulders holding me down and making my whole body seem heavy to my legs.

A lot of the time I have the rubbery leg feeling. With a feeling of weakness. However my legs are strong enough as I still ski and golf. I am on 9.5 mg we all get different feelings and aches and pains as this inflammation moves around the body

Hi @floridabonnie, I am down from 40 mg of porednisone to 4 mg because of GCA, diagnosed about 11 months ago. Just this morning I noticed how heavy my legs feel - like lead weights pulling them down. It isn't constant - usually I notice it when I get up after sitting. I went for a 25 minute walk this morning and didn't experience the heaviness. I've had the feeling before though. It comes and goes.

Never heard of this before, what is it? LAJ

This support group is a wealth of information and learning from each other --- Not knowing a lot of info about PMR such as why - where - how did it all come about with no cure --------------- has the Mayo Clinic done any survey's to search the history, life style, environmental surroundings, living regions and etc. of those who have PMR ??

As a “rookie” to PMR I very much appreciate all your shared experiences. It strikes me that most doctors want you to reduce dosage based on the blood test readings. Unfortunately low readings do not correlate to pain levels. PMR doesn’t pay much attention to your readings. With mornings being the most difficult with my hands I am going to try taking 2/3rds prednisone in the AM and the remaining late evening to see if it makes a difference. I am not sure after all these years that I can learn to shave (along with other bathroom chores) left handed!

@laurine7 Not sure what you have never heard of before - but if it is PMR then I would suggest you start with the Mayo Clinic's site on the topic - https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539 - then read other creditable medical websites both in the US and internationally. Then possibly read a lot of the chats in this chat room and you will learn about a rear disease that has no known diagnostic test to positively identify it, has no known cure, and it's mainstream treatment is long term (years) of large doses of oral steroids meant to hide the pain so the people can function like somewhat normal people. BTW, the demographic for this problem is geriatric patients - something to look forward to in your golden years.