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No remission after three years
Polymyalgia Rheumatica (PMR) | Last Active: May 31 9:20pm | Replies (10)Comment receiving replies
I've been on Actemra since January 2025. I began taking the infusions, when I had flares when trying to taper below 10 mg. of Prednisone. The Actemra allowed me to taper off completely, in November 2025. About a month after I finished my taper, I developed severe pains in both knees, shoulders, wrists and thumbs. It was a different pain than PMR/GCA pain. My rheumatologist has determined that I have osteoarthritis. I informed him that I never had these aches before PMR/GCA. He said osteoarthritis doesn't usually 'show up'. I asked if my Prednisone usage damaged my joints and he said it possibly did.
I've been on 400 mg. of celebrex, daily. I get some relief, but my knees and wrists/thumbs are still pretty painful. Rheumatologist wants to prescribe something different. I have an appointment with my Ortho this week. I told him that I will wait to decide on the prescription, based on what my Ortho says.
Sorry, you are going through this. I feel your pain.
Replies to "I've been on Actemra since January 2025. I began taking the infusions, when I had flares..."
@ropnrose I have osteoarthritis in my knees and shoulders. I have had rotator cuff surgery in both shoulders, fully recovered. My knee ortho treats my OA with gel injections, i.e. hylaronic acid, It is not approved in the US for shoulders so I private pay to have my shoulder ortho give it to me. The other option is steroid shoulder injections. I have no idea what they would do for wrists. I would want a hand surgeon to advise me.
I hope you get the relief you deserve. Steroids provide OA pain relief for me, not so with the biologic. I've noticed everytime I taper my OA pain comes back around 10-8 mg prednisone. I had to quit biologic since it caused diverticulitis. I'm post Tyenne and pre- what's next. I hope you find the Goldilocks solution fit for you.
@ropnrose The pain in my thumb, my hip and my shoulder are being treated with injections. Thus far nothing has helped the pain in my lumbar and cervical spine. I’ve had many injections and I still can’t turn my head to the left or look up at the sky. I’m not sure how many injections I can take to help to relieve the pain. I don’t find the doctors today or all talking to one another to help the patient
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@ropnrose
"My rheumatologist has determined that I have osteoarthritis. I informed him that I never had these aches before PMR/GCA. He said osteoarthritis doesn't usually 'show up'. I asked if my Prednisone usage damaged my joints and he said it possibly did."
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Just my opinion because I don't really know. I think we all have some osteoarthritis at the age we are diagnosed with PMR whether we feel the pain or not ... I certainly did.
I had very severe osteoarthritis in my right knee from a sports injury during high school. I was told that I needed a knee replacement before the age of 30 but I had to wait until I was 60.
My right knee was already deranged but the mystery was how bad my left knee was when it was replaced. I actually had my "good" left knee replaced before my "bad" right knee. Both surgeries were done during the height of my PMR diagnoses when I was still taking 30 mg of Prednisone. My orthopedic surgeon basically said the same thing as your rheumatologist. He said both my knees were so bad that "wear and tear" arthritis couldn't explain it all. I knew how bad my right knee was but I always called my left knee my good knee. My orthopedic surgeon said chronic inflammation would explain it but Prednisone didn't help the situation because of how it destroys connective tissues.
Artificial intelligence seems to agree:
"The Prednisone Paradox: While high-dose Prednisone is critical for knocking down the systemic inflammation of PMR, it comes at a cost to your musculoskeletal system. Glucocorticoids are known to inhibit collagen synthesis and weaken connective tissues, accelerating structural damage in joints that are already under stress."
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Both my knees had severe osteoarthritis in addition to severe osteoarthritis of my spine and everywhere else they look since I tapered off prednisone. Having that much arthritis might only be explained by wear and tear AND chronic inflammation AND prednisone.