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

@robinleslie ouch…..80yo on Wednesday, and know your pain.
CRP and SED rate are the key numbers.
Google PMR and see if it’s familiar.
After you get diagnosis check back nd let us know.
Start a daily journal of pain, meds and activities.
We are here for you. Ask anything.

Thank you so much, I’m frightened.
It’s 1:20 am and the pain is extreme and I can’t sleep.

@robinleslie Dont know your other med conditions or drugs…..ask your DR if you can take Tylenol for Arthritis as Short term relief until you get your diagnosis 🤞

Hi,
I'm curious if anyone had their PMR start shortly (maybe 2 to4 weeks) after a vaccine shot. Mine did about a year ago after a Prevnar-20 vaccination! While trying to deal with the pain through physical therapy I discovered 3 more patients with similar beginnings to their PMR stories. Two had symptoms that began after COVID vaccine shots and one after the current flu vaccine. Research has revealed a small number of additional patients starting PMR following COVID shots. Manufactures have little or no info to share. I lived with the pain 6 months until my MD son came home and recommended CRP & ESR tests which confirmed it. I still have it after slowly stepping down the dose conc. to zero over several months. The only potential allergen I find common to all three vaccines is Tween-80. Two new surfactants have been developed that in the future may replace Tween-80 in vaccines and other drugs.

I’m not sure if I am typical or not. I took a very hard fall, I’m kind of a “just get up and keep going” person. I slammed the whole right side of my body onto concrete floor. About a week later I had difficulty lifting a cup with my right arm.. right shoulder and ribs very painful.. thinking”I broke something”
A few days later woke with terrible flu like symptoms “but not quite exact” . I could not get myself upright from bed, could not get up from chair, get in and out of bathtub, get dressed. Curiously the severe pain was only right ribs , arm and shoulder and only then moved into my left shoulder. Otherwise just severe general malaise and low grade fever. I am very active 71 and was returning from a 5 mile hilly hike when I fell.
7 trips to Dr, and numerous blood tests and xrays over a month to get diagnosis.. CRP and sed rate thru roof. 1 dose of prednisone and all better… apparently this is defining. That was several months ago and weaning prednisone now, on 3mg.
My onset was very quick and very hard. My Dr thinks I may not relapse. I hope not. I love gardening and hiking and I live alone.

@robinleslie
Of course you’re scared. I was scared. I remember the painful nights keeping me awake. I didn’t understand what was happening.
Mine was hips, back, shoulders, hands, feet and my good knee.
I took Advil Dual Action.
Advil Dual Action combines ibuprofen (125 mg) and acetaminophen (250 mg)
as per instructions and it did help until I saw my PCP.
He immediately prescribed a “steroid pack” which was Methylprednisone, and it immediately (24-48 hours) made me feel like Superman.
When it ran out (6 day pack) I was back in pain as bad or worse. He told me my SED Rate and CRP levels were higher than high. And, that I had classic PMR with also not so common hand and feet pain.
He prescribed Prednisone, 20mg, twice daily. I’m a male, 69, 5’7”, 180 lbs (80kg)
Again, 24 hours later, all the pain was gone.
Then, the side-effects off Prednisone hit.
Now I live without pain and take prescribed supplements to counteract the negative Prednisone side-effects along with a biologic called Kevzara to get me off of Prednisone sooner. I’m down to 5mg of Prednisone daily and plan/hope to be off by the end of this year.
You aren’t alone and everybody here has been in it and/or through it. We all feel your pain and wish you well, and pain free without complications soon.
Ask your doctor about a “steroid pack” for a 1 week trial and see what that does for you. I’m a retired science teacher, not a doctor, not your doctor, and don’t know your history so my suggestion may be bad for you. So, call, message, text or however you can talk with your doctor, do so. If you have PMR, the immediate pain can be stopped. You’ll still be scared, but you’ll know what the problem is and that’s a start. There’s lots of support here, so stay in touch. We care.
Randy

I didn’t care how bad

@queenshort
Trauma can definitely cause PMR to kick in. It is a stress to our system and a perfect scenario for the disease.
Mine started after a traumatic foot injury needing 7 stitches. I knew the symptoms of PMR as my mother suffered with it.
Pain was increasing as I was recovering from the injury… I knew what the outcome was.
A lot of us can identify a trigger to our diagnosis. Sometimes I think it can be coincidental but often not.

@pmr100 Yes, I did. You can use the Search feature on Mayo Connect - I would suggest the one for this Group and not all Groups. You will find plenty of others with the same experience.
I believe it is not the vaccine directly, it is because vaccinations all super charge your immune system to produce the antibodies and that sets off a reaction the ends up being PMR. In my case I believe any vaccination would have caused it because my immune system was low due to a prior short course of steroids. I now make certain that my immune system is as good as possible and I never get more than one vaccine at a time.

@queenshort OH YES! I had terrible bike fall on my back. Broke nothing, but wazoo….raging PMR developed. The trauma did it. Never broke a bone, never been sick before….its a journey. Good luck and keep asking us questions.

@tweetypie13
Wow.. sorry this happened to you but it definitely strengthens my conviction that my PMR was precipitated by my fall… I def don’t think my PCP or Rhematologist agree 😉