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

I was seeing a doctor at the VA that refused to use prednisone or medrol due to my diabetes. I came close to suicide from pain but a good doctor was found and am on a low dose of 8mg medrol daily and still controlling all side effects. My rheumatologist is trying different add on meds the latest of which is Plaquenil. No bonus yet a month in but still taking the medrol as well. when I taper down the Medrol and the pain returns they put me back on it and try a new.. Always follow doctors orders but dont always listen to the same doctor, get an opinion from another rheumatologist. Primary care docs usually dont have insight to PMR and do not know the insane pain it can cause.

Thank you Laurie, yes I meant GCA and your response has helped a great deal. I will request the biopsy. The headaches are very mild and come and go. No sharp pain in temple but the neck pain is very persistent indeed. The PMR is persistent as well and I wonder is something else going on here.
Thank you for your post,
Be well,
MaryAnn

I’m on my 3rd bout of PMR, slowly decreasing prednisone. I had an interesting experience with accupuncture between 2nd and 3rd bouts when I thought I was in remission, but having lots of knee pain/leg pain. I signed up for 3 sessions and after each I would have unusual pain the next day. My acupuncturist had no answers, but in another conversation said that accupuncture stimulates the immune system so can make autoimmune conditions worse. I was diagnosed with PMR 4 months later. I realized later that the PMR was there and the accupuncture did not help, actually made it worse. So would not suggest accupuncture for PMR, though I have used it for different things

@maryannhaller.
Hi MaryAnn:
I'm so glad you'll pursue this further. As you might know, PMR often leads to GCA, as attested to by many members of Mayo Clinic Connect. It's vital for you to check this out further! Way to go, and best of luck! Warmest wishes. Laurie

Hello Ethan: I’ve posted a couple of times but never got to the major point. The story warrants attention.
Prior to taking a trip to Costa Rica, in 2014, I had a physical with flying colors. I have a propensity to attract every blood sucking insect imaginable which may be the start of this malaise.
Ten (10) days after returning from this trip I couldn’t move my jaw hands, wrists, shoulders spine, knees, ankles, toes, I’m sure I missed something. The worst is the flu-like symptoms with severe systemic pain.
My PCP put me on 20mg of prednisone & I thought I was cured.
The up & downs of tapering became self induced because I knew the numbers in conjunction with how I felt. I figured this couldn’t continue & wanted concrete answers.
I applied to Mayo, John’s Hopkins, Ocshner, etc., a “team” to work with me, however, was turned down.
My own research lead me to INTESTINAL PARASITES. Unexplained arthritis can be a result of insect borne, unclean produce, the water, walking bare footed, rubbing your uncleaned hand. There are so many ways to get these tropical diseases, and in 7 years, like COVID, Flu, etc. these parasites are evolving and morphing into uncontrollable bugs with a mission to latch onto a host - causing illnesses.
Here’s how I did it. Pumpkin seeds, ashwagandha, colloidal silver, turmeric - curcumin, bromelain, take the supplements with water & lemon. None of the above interact negatively with my R/x drugs, however, ask your dr. prior to getting into any of this.

To warriorSue: I hesitate to share too much info like the brand name of a supplement for eradicating bugs. Drs. may not agree & find dangerous to the general public, hence the urgency to consult prior to a regimen.
You may hear “Health starts in your gut”. When tho first happened, it was mind blowing how it moved around but the infectious disease dr. said that’s what they do! Again, try looking for holistic, alternative medical providers soon. Parasites can damage soft tissue organs and intestines.

I understand & respect the hesitation. I have 2 holistic practitioners and an herbalist who have done wonders for me but my mom doesn't believe in it. Praying I can convince her to try it. Blessings and healing to you <3

oh gosh...that's awful, and thank you for sharing. My mom CANNOT handle any more pain. I'm sorry that you, too, are battling this dreadful condition. Never give up researching and trying to find answers. I've been battling Lyme disease & EBV for nearly 4 years, which caused my thryoid to fail as well. Had I not turned to alternative medicine/treatment & energy healing, I would have died. Stay strong! Wrapping you in the purest light and love <3

Thank you for replying. I wonder if she'd do better on medrol, though she doesn't want to take steroids anymore, nor does her doctor want her on it. Plaquenil is not helping her either. She, too, was pain free whilst on prednisone but when the dose was too low, all the pain came back. It's just awful. My heart goes out to all of you here who are suffering with ths very cruel disease. NEVER GIVE UP trying to find answers. Sending you pure healing light <3

Grateful for your response <3 I'm sorry you are struggling, too. It's a very cruel disease. I pray I never get it and that a cure will be found for those suffering. I will mention the omegas & D to her doctor and will also research it. I've been taking those for years so hopefull it will help. Something has to give... Love and healing light to you <3