Is it PMR (and/) or Osteoarthritis?
My encounter with PMR began in November 2022, when suddenly I was beset with the pain and stiffness you are all familiar with. Even rolling over in bed required a fully-developed plan implemented with gritted teeth. Climbing the stairs was done on all fours. After a couple of weeks the diagnosis was made and a hefty dose of prednisone was started. This med was almost cartoonishly effective. Now I am on a taper like everybody else here!
Anyway, for months I have been bumping my way down the taper (presently a split dose of 6 and 3), with a pain level of 1 to 1.5 fairly consistent, and with a rare 2 or 2.5 usually associated with strenuous labor. However, ever since beginning the prednisone I have had no symptoms in my upper body; they are all located in the hip area. Furthermore, the symptoms are all located in the groin area, say, inboard of the hip flexors. OK, near my tackle. I have zero symptoms outside the groin area.
I know that osteoarthritis is lurking as it was identified in a hip x-ray taken when this all first hit, but the arthritis had been asymptomatic. But I am wondering now if in fact the PMR is being fully controlled by the steroid and all felt pain is actually associated with the arthritis. If so, perhaps I should stop hand-splitting firewood and speed up the taper.
Could you please weigh in on the following questions?
1. Do you have symptoms in your upper body/shoulders?
2. Precisely where are your middle-of-body symptoms located?
Many, many thanks!
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I am on Kevzara, a 200 mg injection every 2 weeks. I have now been off prednisone for about 2 weeks. No PMR symptoms. No side effects to date for the Kevzara.
Thank you for the info.
I'm doing monthly infusions of Actemra (tocilizumab) for refractory PMR. Actemra is FDA approved for GCA but a waiver was granted so I could receive Actemra. I was able to taper off prednisone.
Kevzara shares the same classification as Actemra. Kevzara is FDA approved for PMR.
Kevzara and Acterma are IL-6 inhibitors. IL-6 is the cytokine implicated in both GCA and PMR.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7178926/
I haven't had any serious side effects from Actemra. I have taken Actemra for more than 3 years. I have been prednisone free for 2 years. I was on prednisone for 12 years and I was unable to taper off prednisone. My rheumatologist didn't want me to be on prednisone for the rest of my life.
I too have both osteo arthritis and PMR. I recently fell and broke my left shoulder and arm and had to stop taking Kevzara for MOHS surgery. I then had to take an antibiotic for a week for infection in the surgical site. At the end of that I was in terrific pain all through my shoulders, neck and arms. I took norco and tried percoset but the pain was not helped and I realized it was a PMR flare. Prednisone took care of all the new severe pain. It was a PMR flare. It even hurt to take each breath! I forgot how severe PMR pain can be since it had been a while since I had a flare. It can be confusing when you have constant pain from more than one cause. Best of luck in the future.
I've seen a physiatrist for lower back and left hip pain not associated with PMR. I have a narrowing if the spinal column compressing the nerves to those areas. There is some degeneration of the bone of my left hip also. This is not associated with my PMR. When it first came on, it got so bad my upper body felt like it was being whacked with a 2x4 all day and my legs were so stiff I could barely walk. Now if I get a flare it is usually confined to the upper body although I might feel so e lower body pain. I take Prednisone but it isn't having any effect on the inflamed nerve in my lower back; go figure.
1/2 tsp Cayenne pepper in honey, I take a tsp every day and no problems with circulation anymore
My PMR has been in remission for 8 years but I, too. a cyst compressing on my spine at T3. I have intermittent pain up and down my back. Last night I pulled a muscle in my lower back to add to the issues. I’m just grateful I am vertical! I take Gabapentin for other nerve pain which may also help with the spine. 🙏
How long were you on Kevzara before you could taper off Prednisone? And how long do you need to stay on Kevzara?
I'm guessing it was a synovial cyst? I had one on my lumbar spine that nearly made me have a lumbar fusion. I was off Actemra at the time. When Actemra was restarted the synovial cyst went away.
My is arachnoid. Glad yours went away. 🙏