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Out of frying pan, into fire? PMR aftermath
Three months since tapering off. Somehow, I imagined that once off prednisone and done with PMR, I’d go back to the body I had before. I was wrong.
Since prednisone, my knees and hips, as well as other joints have become increasingly stiff and painful. A lab shows no PMR relapse. A knee x-ray has turned up "calcium crystal deposit disorder." From research articles, I learned that it is the third most common arthritic disorder and is sometimes misdiagnosed as PMR. But unlike PMR, it is progressive and can end up destroying your joints. Has anyone else had experience with this?
Once again, I have a “common" disorder that I never heard of and don’t know what to do about.
My doctor has chosen to ignore this diagnosis for some reason and is focusing instead on “osteoarthritis." I think he’s wrong. I don’t know what to do about that either.
Any insight into Calcium Pyrophosphate Deposition Disorder? Also sometimes called pseudogout.
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Yes, my Mayo rheumatologist took fluid out of my right shoulder looking for crystals on 9/2/25. Pseudo gout. He isn’t convinced I have RA/PMR. No crystals at all. Since then he has all but dropped me. No response to my patient portal.
My bones are being eaten away. So much so I had left shoulder reverse total shoulder replacement on 10/29/25. My right shoulder is now in dire need of replacement. I’m on a few other chat rooms trying to get suggestions, etc. This all happened from a shingles shot taken 18 months ago. Doctors don’t believe that either. They think I aged into this. I did not.
Today I will see my Prescott rheumatologist and beg for drugs.
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2 Reactions@susanlf
No pseudogout for me!
I was diagnosed with the real McCoy because I was recently diagnosed with Gout after tapering off Prednisone.
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I successfully had knee replacement surgery on both knees while on Prednisone. You would think nothing could possibly go wrong with my knee replacements. However, my knee pain got worse after I got off Prednisone.
It happened slowly but now I have extensive areas of heterotopic ossification in the soft tissues around both of my artificial knees. Now I have bone in the soft tissues where bone is NOT supposed to exist. They won't remove the extra bone because they say more surgery will make it worse. I'm not supposed to ever have surgery again.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6478587/
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Sometime I need to ask how they know if it is bone around my knees or maybe it might be uric acid crystals from Gout.
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3 ReactionsI am so very sorry to read about your issue and pain. I’ll pray you get the answers and treatment you need. Soon.
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1 ReactionOff prednisone for a year, my right knee became sore and swollen. Xray show "small fluid". Dr. Google says gout is one of the possibilities but I haven't had the fluid tested yet. So this conversation is very interesting to me.
7 years of pmr
I have had my hands x-rayed twice because of pain and/or swelling. I was diagnosed with osteoarthritis and cppd arthropathy. It was more pronounced the second time. Increasing the prednisone for a period of time controlled it. In 2024 I was having a knee problem, Osteoarthritis and cppd was the diagnosis. I opted for a cortisone injection which did help my knee. I now have a right shoulder problem - since Thanksgiving. I think too much leaf raking aggravated whatever is wrong. A fall is what aggravated my knee.Seeing ortho tomorrow. December crp was 19, January crp was 10. I did not increase the prednisone. I am at 3mg, been at 3mg for a few months hoping for adrenals to start functioning before further tapering.
Am just waiting for a shoulder diagnosis, I see rheumatologist in 4 weeks.
I am very reluctant to take more/less/new meds. Taking Tylenol seems to elevate my liver enzymes. Taking less prednisone seems to ignite a flare of some kind of joint problem.
There is no cure for cppd crystals. I do gentle hand/finger exercises before I get out of bed every morning. I think it helps.
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1 Reaction@pmrsuzie Thanks for this info on CPPD (calcium pyrophosphate deposit disorder.) What I’m grappling with is, given there’s no cure, how to best preserve joint function and not become totally disabled. Like, should I avoid exercise? It seems like taking meds like prednisone would lead to overworking joints that are being stressed by crystals that are sanding them down. It’s sort of a catch-22.
@elsbeth, as far as I know, various medications are the treatment for a flare. Methotrexate was suggested to me and I declined. I upped my prednisone dose a little and that worked for me. I guess you should talk to your Dr about treatment options. Maybe some PT
@pmrsuzie I was first diagnoses with CPPD and my rheumatologist prescribed me medication for it. But that didn’t help because I was later diagnosed with PMR. I still have CPPD crystals in my knees. Have had operations in both 30years ago. Doctor said that it is normal crystals appear in damaged joints when you are getting older. Crystals can move to other joints but doesn’t mean it always does.
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1 Reaction@pmrsuzie
I hope just staying on 3 mg of prednisone for a few months helps your adrenal function to recover. Staying on 3 mg of prednisone for 6 months helped my adrenal function to improve.
I still needed help with preventing PMR flares and Actemra was invaluable for doing just that. I would have never been able to stay on 3 mg of Prednisone without Actemra.
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Research into CPPD is evolving. Take note of section 5.2 about IL-6 inhibitors in the following link.
https://www.mdpi.com/2813-4583/3/4/22
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Since I was recently diagnosed with gout after PMR was treated with Actemra I'm learning a lot of things. It was interesting to me that IL-6 inflammation drives gout flares too.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12221926/.
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The following case report could have been me but I don't think chlamydia was the trigger for my reactive arthritis. Only God knows how long my IL-6 levels have been elevated. I had to get off prednisone after 30 years to find out my IL-6 levels were elevated. It is amazing how these chronic inflammatory disorders superimpose onto each other.
https://pubmed.ncbi.nlm.nih.gov/31577714/
Even though Humira didn't seem to work as well for me, I was still offered a choice between Humira and Actemra. I'm happy that I tried Humira but I chose Actemra over Humira and Prednisone.
As my rheumatologist said, "I wouldn't know unless I tried it to see if it works or not." My choice has been better than lifelong Prednisone even though I had already taken Prednisone for half of my life.
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1 ReactionI think many doctors are uninformed and you’re not off on your reaction to a “vaccine “. My PMR started 24 hours after my first covid shot. Going on 3 years fir me but I’m down to 1 or 2 mg of prednisone every other day and Actemra injection once a week. I’m careful but I have very little pain or limited movements. 🤞🏻. No more vaccinations for me. I hay not had one for 3 years now. I did have prevent 13 vaccine about 10years ago. And I’ve thought about asking about another pneumonia vaccine but I’m not anxious to rock my boat. Good luck. Ask your doctors to give options. Then research them carefully. Then choose. It’s trial and error with these things