← Return to Out of frying pan, into fire? PMR aftermath

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Profile picture for pmrsuzie @pmrsuzie

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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Replies to "7 years of pmr I have had my hands x-rayed twice because of pain and/or swelling...."

@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.

@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.