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

I agree! This is my third episode of PMR over the past 30 years. Now during this third episode and at the age of 78 the “gift “ that it has given me is to release my attachment to an outcome. Not just with PMR but with so many things in my life. Do the dishes really need to be cleaned right now? Can the weeds wait just a little bit longer? And the Acknowledgement that my body will dictate how I taper off of prednisone. I so appreciate this forum and the courage to be vulnerable and share your experiences

Hi - I was diagnosed about 8 weeks ago with PMR, first by my retiring PCP, who was able to help hand me off to a new PCP and shoulder specialist. The new PCP and Ortho worked to get me into a rheumatologist as quickly as possible, along with CRP and set-rate test, which supported the initial diagnosis. I started with a Prednisolone pack, and when I was done with it for a few hours, the pain came roaring back, so my PCP put me on 5 mg prednisone, and a few days later, we upped it to 10 mg. Finally, the meeting with the Rheumatologist produced a 20 mg script of prednisone, which increased a few days later to 25 mg due to unsatisfactory results from the 20 mg. Rheumatologist gave me instructions to reduce over several upcoming two-week periods until I go back in to see her.

I am anxious to learn more about this disease and other patients' experiences. I still have some pain, particularly if I am over 24 hours since my last dose, but nothing nearly like what was the case a few weeks ago! So I ask, "Is this normal?" "Should I say something now?" or "be patient!"

THANK YOU FOR THIS FORUM!!

Sounds like the Rheumy is trying to get you down pretty fast. Don't let her rush you too fast. All it does is cause you pain and delay in getting down, by ending up having to go backwards. YOu didn't say what the amount to taper is each 2 weeks. If you still have pain at the end of a two week period, you should not go down. Wait another week. If the pain is still there or worse, you need to speak with the doctor. You have to listen to your body.

Hi @sashakay, I really think there is something to that, "the courage to be vulnerable", coming down from a high place of ability to a place of pain and weakness, an acknowledgment of frailty. I am much better now and I have learned the lessons you expressed about dishes, weeds and other tasks. I don't push myself to accomplish more than is comfortable each day. I'm just grateful for what I can do and that I still can do some things. Thank you, Teri

What are the symptoms of this

Diagnosed Mar 8 2022. Polymyalgia rheumatica and fibromyalgia. Took about 4 years to get a diagnosis. Just knowing what this is helps me cope! I am on Prednisone 15 MG and generally feel better. I worked in Healthcare for 32 years. I have osteoarthritis and have been coping with this for 25years, Also a few degenerative disc's in my lower back. Bad knees. Nothing was as bad as trying to get a diagnosis for PMR. I am coping daily and feel so much better on the prednisone. Unfortunately some things can not be cured. However they are copeable. I am so thankful for this group! Have the best day you can every day

I was just diagnosed with PMR last week, day 6 of 15 mg of Prednisone. I could at least get out of bed and off the couch without much pain now. Can you have bursitis at the same time as PMR? I notice my shoulders still feel sore but at least I am not in a lot of pain. I do not want to go up on Prednisone, can not wait to be off this medicine all together.
I indoor cycled all during the pandemic , since I was working from home for about 2 years. Around 4 months ago I noticed my hips hurt, so I just thought I was over doing it with the biking. It slowly got worse and moved into my shoulders. My blood work came back high with SED Rate & CRP .
Thank you for this forum.

I too appreciate the two last messages. I was diagnosed 15 years ago but with prednisone 1 I did not even know I had anything significant. After eliminating the prednisone completely 15 years later I hardly recognized the problems we’re back little by little. It has taken 6months to accept the new discomforts at age 78. I was not ready to give up a very active life! Very slowly the prednisone has done its work and I am much more positive for the future. Thank you all for sharing. It helps!

I am 74 and diagnosed with PMR Oct. 2020 and am taking Prednisone6.5 mg. now. The dosage is adjusted with my GPs advice after my symptoms reoccur and intensify. Do you also have osteoporosis?
Thanks for sharing.

Hello @emma321, Welcome to Connect. Sorry to hear that you have joined the PMR club. My PMR is currently in remission for the second time but I definitely remember the feeling. I think the hardest thing about tapering off of prednisone is you really have to listen to your body now matter how much you want to get off of prednisone. There are a few discussions you might find helpful:

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/
-- Prednisone tapering and remission: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/

Did your doctor or rheumatologist put you on a tapering schedule?