Newly diagnosed PMR, still in shock - fighting it, sharing, learning

I'm so sorry you're here on the one hand because of the PMR, but glad you found this support group because it really helps. I'm like you, N. Eurropean descent, 73 yr old woman, with similar totally debilitating pain, brutal unrelenting pain, in many same areas and the weakness, stiffness, and into my fingers and how it lasted well into the day every day and how it'd start again every night, middle of the night (1-3am). I couldn't function at all. This went on from Mid-March till 7/31/26 when finally got diagnosis. I'd been trying to figure out what was wrong with me for months. No one else could. It was only some iron, ferritin and CRP, ESR blood tests that gave me the info to search with what my symptoms were. Previous blood tests ruled out RA, ANA, etc.
PMR came up and matched so closely. I got in with Rheumatologist via cancellation list too!! My appointment was 3.5 weeks away so I called and asked to be on cancellation list. Got in 2 day later. What else wakes people up with this kind of pain in middle of night? And these wierd symptoms? It's bizarre. So glad you got enough Prednisone to finally help you out of this pain. I had to go from 15 up to 25mg myself. I truly empathize with you about the pain, and no, people can't possibly comprehend the level of pain unless they've experienced it. . Been there. Don't care to go back if I can possibly help it!! Hope you get all the care you need. Blessings.

Welcome to a club no one knew existed, no one wants to join and no one understands "why me"!
Just to set the record straight, PMR is chronic and even if the first course of prednisone is successful at putting PMR to sleep, always remember it is not gone, it is sleeping. Next topic is even if the PMR is not doing damage, the prednisone long-term can-do damage. I have had PMR since April 2019 and multiple rounds of prednisone did not successfully put it to sleep. Typically, PMR burns out in 2-3 years. Current school of thought is if it is still with you after three years then there is cause to do exhaustive investigative work to find if other problems are at play. A year ago I was Dx with asymptomatic Giant Cell and that has done damage.
Follow your Rheumy's guidance. I can tell you in the last five years they have become much more standardized in treatment. You will see that there is never a one approach solution.
Please know that you are in this for the long game and there is not a quick solution. If you are fortunate enough to have PMR go into remission with your first round of prednisone, even that will take a year or more. Slow and steady is a guideline that you need to cling to. We all want to speed up the tapering process, that is possibly not in your best interest.
Again, welcome and please stay active and ask questions as you navigate the disease and the associated processes.

@nlcarl ....I posted a very similar post about three weeks ago (you can find it by looking back through the posts)...the way you describe the onset is so very similar to me. I'm 58, very health conscious, regular cyclist, try to do tghe right things. When i got the bi-lateral shoulder pain and collar bone pain I was initially sent to physios and thinking it was a trapped nerve or spinal issue or even rotator cuff. Then like you, I had the spread, hips, upper arms, glutes, hamstrings. Horrible morning pain like I had never exp[erienced before. Three week later I'm pain free and now on 12.5mg and next week dropping to 10mg. I really worry about taking steroids but i guess they are a neccessary evil to tame this beast. I'm not getting aheda of myself as I knoe the tapering can be complicated and setbacks might happen but staying positive is a key thing and also managing stress levels better. I've already taken very much a back seat with my job and so far they have been quite understanding and told me to prioritise my health. I'm so glad to hear your pain has more or less gone. Good luck with the tapering...

PMR is definitely one of the most painful things I've experienced. I agree that the possibility of side effects from prednisone didn't factor into the equation of whether to take it or not. If my rheumatologist would have assured me that eating dirt would eliminate the pain, I think I would have tried it.

@tweetypie13 Thank you for all your suggestions and the reminder I’m not alone here. So appreciate this group.

@tweetypie13 Thank you for all your suggestions and the reminder I’m not alone here. So appreciate this group.

@boomermeg Thank you for your kind words. Sounds like we’ve been on an identical journey. Sorry you had to go so long before getting help. But I feel encouraged hearing you’ve gotten past it. Hope is huge with this journey. Love and blessings.

@kjoed53 Love this!
I like to think of Prednisone as a combo of queen Latifah and Amy Schumer going in and kicking the rogue immune rebel cells a$$es that have gone haywire and began attacking my own body. They (prednisone) wear spike heel boots, are a little wild and messy, leave some broken parts and debris, but they’re putting those rogue crazies down and out.

Have to keep a sense of humor during this bizarre battle.

@martyn !! You were the first post I read when I found this forum. Can’t tell you how much it helped me. I was also at the terrified stage and waiting to see rheumatologist the next day. And was being accused of finding made up diagnosis on Dr Google. (Unkind people). It gave me great comfort to know others were dealing with this and I wasn’t alone.

Thrilled to hear your tapering process is going well. That’s a start.

I’ve been able to manage some basic yoga which helps, walk daily, and light weights. I’m no longer my old self, strong parts now feel weak and painful, I feel “off” in general, but so grateful for the pain relief and what I can now do since full dose prednisone.

Stay in touch and keep us updated on your progress. Stay strong.

@nlcarl
It is unusual to hear someone with such similar symptoms because everyone's seem so different (at least what I've read here). Many only have the upper shoulder area "girdle" or hip area "girdle" symptoms without hands, upper arms or lower leg involvement. Some don't get the same weakness or level of pain. So we really do share all that in common, even if slightly different.
I'm not sure that I've gotten past it because I have so far down to taper, and hope not to get any flares. My Rheumatologist wants to put me on Kevzara because she's concerned about flares because I had to go up from 15 to 20 to 25mg to get pain/symptoms completely under control. So, although probably many months to go to get completely off Prednisone or off medications in general, I still have hope, because each day is a gift. Especially without the pain, right?!!! Lol
Blessings