PMR (ending prednisone) and Osteoarthritis flare up

Posted by neztrop @neztrop, 3 days ago

Im 63 and was diagnosed with PMR about 8 months ago with high doses of prednisone throughout. I recently transitioned to Kevzara from prednisone and the PMR seems relatively “under control”. I’m not 100% ok with my PMR baseline but I can live with it. Unfortunately, almost the day of my last prednisone my osteoarthritis really flared up. My knee became VERY swollen and an eventual MRI confirmed considerable OA and a replacement is needed. My ankle and lower back flared too. Together all of this has made it painful and difficult to walk and generally do much of anything. Has anyone else experienced a OA flare up after getting off of prednisone? What happened? Has it resolved?
Note: He put me back on 10 mg and within 2 days symptoms are quickly resolving. My Rheumatologist draws a VERY hardline around PMR and does not see any connections.
Thanks.

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Yes, I've had the same problem. Developed OA in both knees originally and from there over a fairly short time had ankle, toes, shoulders, elbows, wrists and fingers and thumbs all succumb to arthritis and tendon damage. Had injections in both knees, both shoulders, one wrist and probably need have them in my thumbs. All this is visible on MRI, CT etc.

I had to start on 60mg of prednisone when I suddenly started with PMR and pretty much all my OA pains and swollen knee cleared up a huge amount.

As I'm tapering down the prednisone, now on7mg, all the previous problems are slowly returning. Knees, ankles, toes, shoulders, elbows, wrists, fingers and thumbs are almost back to how they were before. So prednisone definitely helps OA in my experience.

If your rhumatologist doesn't see the connection he needs to find some other line of work. My rhumatologist told me when I first started on prednisone that it will make "everything" better. I soon realized she was right. Pity it will never get rid of the OA. I think it just does a good job of helping with the pain and inflammation but I really hate being on it for the way it makes me feel so ill.

I really hope you find a good solution.

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@frenchfrank51

Yes, I've had the same problem. Developed OA in both knees originally and from there over a fairly short time had ankle, toes, shoulders, elbows, wrists and fingers and thumbs all succumb to arthritis and tendon damage. Had injections in both knees, both shoulders, one wrist and probably need have them in my thumbs. All this is visible on MRI, CT etc.

I had to start on 60mg of prednisone when I suddenly started with PMR and pretty much all my OA pains and swollen knee cleared up a huge amount.

As I'm tapering down the prednisone, now on7mg, all the previous problems are slowly returning. Knees, ankles, toes, shoulders, elbows, wrists, fingers and thumbs are almost back to how they were before. So prednisone definitely helps OA in my experience.

If your rhumatologist doesn't see the connection he needs to find some other line of work. My rhumatologist told me when I first started on prednisone that it will make "everything" better. I soon realized she was right. Pity it will never get rid of the OA. I think it just does a good job of helping with the pain and inflammation but I really hate being on it for the way it makes me feel so ill.

I really hope you find a good solution.

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"Pity it will never get rid of the OA. I think it just does a good job of helping with the pain and inflammation but I really hate being on it for the way it makes me feel so ill."
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My rheumatologist went so far as to say that I should expect to have pain when I tapered off prednisone. She said Prednisone was only intended to decrease the inflammation. She said there were other medications to help with the pain and asked me if I needed anything else.

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I am tapering off prednisone and taking Kimzara. I too have bad osteoarthritis and fear what will happen when I'm off prednisone. Should be about 2 months. Its been wonderful to be in so much less arthritis pain! I dread going off prednisone although I know I must. I guess the Kevzara does nothing for the arthritis pain?

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@kpoesch

I am tapering off prednisone and taking Kimzara. I too have bad osteoarthritis and fear what will happen when I'm off prednisone. Should be about 2 months. Its been wonderful to be in so much less arthritis pain! I dread going off prednisone although I know I must. I guess the Kevzara does nothing for the arthritis pain?

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"I guess the Kevzara does nothing for the arthritis pain?"
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Osteoarthritis pain is more of a mechanical type of pain but it still has inflammation involved. I can't speak for Kevzara because I'm on Actemra. I think Actemra helps my arthritis pain. I have osteoarthritis and inflammatory arthritis but not RA. Both Actemra and Kevzara were originally developed for the treatment of RA.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6565968/

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Similar thing happening with me. I'm about to go totally off prednisone. I can tell the PMR is gone. But on the way out all my old injuries started to hurt. Neck, ankle and thumb. All injuries from a long time ago started hurting. I'm taking it as a good sign. Also, along with these new pains, I can do pushups again. I can run up the stairs. I no longer have a problem pulling blankets over me at night from PMR shoulder pain. PMR may do something to the geography of the synovial joints? Maybe exacerbates osteoarthritis? Don't know not a doctor, but what's happening may be a good sign. The end of PMR can't be bad.

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After consuming 27,000 mg of Predisone in one year, I also found it hard to taper off. I began dropping from 20 mg to 10 mg in one jump and found it didn't work. I went back to 20 briefly, then started reduction at 1 mg per month. That went OK until I got down to 3 mg and got a flare-up. Went back to 5 mg and tapered to one mg at which time my Dr. suggested going to 1/2 mg for another month before stopping. I have not had any problem now at zero for the past month so I feel I have finally made it off Prednisone for good.

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@everett02

After consuming 27,000 mg of Predisone in one year, I also found it hard to taper off. I began dropping from 20 mg to 10 mg in one jump and found it didn't work. I went back to 20 briefly, then started reduction at 1 mg per month. That went OK until I got down to 3 mg and got a flare-up. Went back to 5 mg and tapered to one mg at which time my Dr. suggested going to 1/2 mg for another month before stopping. I have not had any problem now at zero for the past month so I feel I have finally made it off Prednisone for good.

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Is there an extra zero on your annual cumulative prednisone dosage? 27,000mg for the year is 74mg per day, that's very high.

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@megz

Is there an extra zero on your annual cumulative prednisone dosage? 27,000mg for the year is 74mg per day, that's very high.

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The reason for the high dosage was I was on what is called the Ponticelli protocol for kidney failure. The protocol calls for alternating Predisone with a chemo drug for six months. On the first three days of the three months on Prednisone, I received three thousand mg injection each day. I got a kick out of the reaction of my Dr. when I mentioned this. He said, “Yes, 27 grams is a lot.” I guess it all depends on how it is expressed.

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@everett02

The reason for the high dosage was I was on what is called the Ponticelli protocol for kidney failure. The protocol calls for alternating Predisone with a chemo drug for six months. On the first three days of the three months on Prednisone, I received three thousand mg injection each day. I got a kick out of the reaction of my Dr. when I mentioned this. He said, “Yes, 27 grams is a lot.” I guess it all depends on how it is expressed.

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Correction, that was 1,000 each day, 3,000 over three days times three months. The balance was high dosage during the rest of those months and six months of slowly beginning to reduce. In total it took a year and a half to get totally off Prednisone, mostly at 1 mg per month.

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My story : Had terrible pain across my chest as well as other parts of my body. Took forever to get an appointment with a rheumatologist Even thought I had pleurisy . Dx with PMR. On the miracle drug prednisone at 20 mg . No pain within 4 days. Gained 23 lbs in 18 months . ( started at 128 lbs ) My breaking point was 10mg prednisone . Began to notice I could not get up from the floor due to weak both legs . Dr said I developed cortico steroid myopathy from prednisone. Meantime went on kevzara in March 2024 and totally off prednisone in July 2024. Sed rate still low. Dr was going to attempt my going off Kevzara by increasing the time time between shots from two weeks to three weeks. All was on schedule. My legs got stronger and at PT we started working on my balance instead of strengthening because my strength was really increasing . ( I lost 15 of the pounds I had gained ) . Then 3 rd week in Jan on 24th . I started to have severe pain in the front of my right thigh. 8-9 plus Tried everything pain killers which did not touch the pain. Lyrica ,acupuncture, 2 epidurals . Finally the pain subsided but my right leg became very very weak . Lyrica 3 pills before bedtime and two during the day did the trick with epidural. But my legs and ankles started swelling so I had to titer off lyrica. Gained 7 of the 25 I lost from swelling while on Lyrica
MRI showed 2 herniated discs on the right L3-4 and L4-5 in Sept 2023 but I had no back pain. MRI in 2024 showed same two herniated discs but change in L3-4 including I had pain in its pathway . Just had surgery for a fragmented L 3 /4 May 21 with a neurosurgeon. Strength in my R leg came within 36 hours, the time I spent in the hospital Microdiscectomy L3-4
Rheumatologist said to stop Kevzara 10 days before and a week after surgery Can’t start PT for 4 more weeks but my legs are much stronger,. Waiting for blood test because now I had a long span without Kevzera . The left side of my back is now hurting. I can’t stretch it out due to limitations from surgery Is it a new problem or is it PMR or is it from not stretching or overuse syndrome ????
That is my story for now.

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