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@ga29
I came down with PMR in the year 2000, so 26 years ago. I've never had a recurrence since. The doctor started me on Prednisone, which helped immediately, but because of side effects I learned of through googling I asked the doctor how soon I could get off it. He told me that since it had been less than 2 weeks since my first pill, I could quit cold turkey, which is what I did. Googling back then also said it could last 2-5 years. For close to 2 years it was really rough - especially the shoulders and upper arms. I don't know if that could be why I've not had a recurrence. (I'm 87)
A friend came down with PMR about 5-10 years after me; she took all the meds. She's never been able to get weaned off of all of them and she developed osteoporosis which she definitely blames on the Prednisone. She says she wishes sometimes she'd have toughed it out like I did.
Replies to "@ga29 I came down with PMR in the year 2000, so 26 years ago. I've never..."
@trudy9 yep, but toughing it out is soooooo tough. I was on pred only 5.5 months and that seems short compared to so many here suffering. But I am having to tough it out. Bearable but it can get me down, the continuous pain in shoulders. Pain level 2-3, not PMR 8-9. I remember strategizing 45 minutes to see how to get out of bed to use bathroom;-)
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@trudy9
Thank you for your help with this issue. I wish I had thought more about taking prednisone. I was just so miserable.
I remember back to my last cervical fusion a few months before I was diagnosed. The first fusion was anterior, C4-C7, a pretty easy recovery actually. The pain was minimal. At six weeks I went for my X-ray, where they discovered one of the screws had loosened and was aimed at my airway.
Doctor said my osteopenia was not the cause, it was a bad screw.
I was scheduled for a removal and another surgery, this time a posterior fusion. Terribly painful, they cut through the back muscles so every arm movement caused terrible pain. I was unable to get out of bed except for the bathroom.
The surgeon gave me IV steroids, the next morning I had my walk down the hallway and I was discharged home!
Steroids were also helpful in getting me off my chair over the next few weeks, intermittently.
The surgery was September 29th, and I was diagnosed with PMR in January 2026.
My steroid dosage was only 8 mg. Daily, as the rheumatologist knew I had osteopenia. I had 12 mg. For 2 weeks, only because I complained of pain.
Here I am all these months later. Still trying to taper off from 6 mg.
I’ve been getting PT for my additional problems - I had fractured my sacrum; and when looking at my CT scans they found I had an old ‘chronically healing’ pelvis rami. A break that won’t heal. Which caused tendonopathy of my hip, I couldn’t walk! I had a walker, a cane, but now finally I’m walking around and so much better after Physical therapy.
I am hoping the Kevzara will help me get off the steroids. And help with this pain, it feels never ending sometimes!
For anyone who worries about taking steroids, I advise to be careful and try to taper as soon as you can.