1. < Polymyalgia Rheumatica (PMR)

Newly diagnosed and contemplating how long this has been coming on.

Posted by nothatkaren @nothatkaren, Dec 12, 2024

A couple of years ago, I started experiencing unexplained muscle pain in my back muscles on both sides of my spine, from my shoulders down to my hips. It was a different kind of pain than I'd ever had; a deep and burning ache, persistent, always there, but worse at night and in the morning. I blamed it on aging and didn't really pursue it because although I was uncomfortable, I was managing. This summer it got a lot worse to the point that I was pretty much debilitated. The pain was terrible and it spread from my shoulders down my arms, my back, hips, and legs. I couldn't dress myself. I was diagnosed with PMR about a month ago. I'm not all that good with medical jargon, but the inflammation levels in my blood were 55, and normal is below 10. I was put on 65mg Prednisone daily. It was like a miracle. The pain was gone the next day, and I hadn't felt that good in 20 years. The doctor reduced the dosage to 50mg after 10 days, and I have now reduced to 25mg daily. Problem is that the pain is coming back. My question though, is this; Could I have had this for quite some time before being diagnosed, just not as severely as when this major flare up occurred?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

aisp3b | @aisp3b | Dec 22, 2024
In reply to @ddr "I was diagnosed with PMR several months ago. Prior to any real pain symptoms I lost..." + (show)
@ddr

I was diagnosed with PMR several months ago. Prior to any real pain symptoms I lost 20 lbs in a very short time. Was wondering if anyone else experienced this. The weight doesn’t seem to want to come back.

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Prior to starting the prednisolone I lost 6 pounds.. I think PMR decreases your appetite because I am a healthy foodie. I don't eat junk food but I do like to eat. It was a surprise for me to lose weight witout trying I'm down 6lbs which I could afford to lose. My appetite is pretty good but I am being very careful about ssugar and carbs because of the steroids.

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54pontiac | @54pontiac | Dec 22, 2024
In reply to @ddr "I was diagnosed with PMR several months ago. Prior to any real pain symptoms I lost..." + (show)
@ddr

I was diagnosed with PMR several months ago. Prior to any real pain symptoms I lost 20 lbs in a very short time. Was wondering if anyone else experienced this. The weight doesn’t seem to want to come back.

Jump to this post

I lost 15 pounds with the onset of the inflammation and no change in diet. When I went on prednisone (4 months later) I gained 5 back but never experienced the hunger side effect. I had gained 15 pounds with menopause and was glad to be back to my pre menopause weight. It has stayed the same for a year and a half now and I’m almost off the prednisone. Good luck!

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orangecat | @orangecat | Dec 24, 2024

I can't comment on how long your PMR has ben the underlying cause of your muscle pain but. I post this question here because of how debilitating you describe your muscle pain. My question is. "Do you feel your PMR is a significant condition or merely a nuisance". I feel my PMR is a very significant condition but I have had others say "oh that, it is common." Well if it is common it got by me as I have never known anyone else to have it. I will comment on your daily dose of prednisone. By comparison 65mg (or even 50mg) is way above what I have been put on (5mg 3x daily) Wow, what a difference. My PMR started in my left bicep. Pretty much making my left arm useless. It took over 6 months for my diagnosis to be made and I am the one that first suggested it. Of course my PCP dismissed my belief. This was the same PCP that told me the reason for lower leg/ankle/foot swelling is most often not found and how I should just go ahead an start wearing the socks. I am thinking that my trigger finger (in 4 fingers) and my vision problems is related to my PMR. I did experience the weight loss due to poor appetite.

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neztrop | @neztrop | Dec 28, 2024

I appreciate your post and certainly have the same question.
I’m 63 and had pain, stiffness, lack of flexibility as long as I can remember. I had 4 hip replacements starting in my mid 40s. I had Back and Shoulder surgery and ongoing sacroiliac joint issues. When my PMR came 3 months ago it was like a tsunami.
The flexibility and comfort with my body that I experienced on Prednisone (50mg) was unlike anything I had before. I started to wonder how far back this had really started and if there were signs way back in my early life. I’m at 25mg now and a fair amount of pain is present everyday until about noon.
Thanks for the question.

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1 reply
DadCue | @dadcue | Dec 28, 2024
In reply to @neztrop "I appreciate your post and certainly have the same question. I’m 63 and had pain, stiffness,..." + (show)
@neztrop

I appreciate your post and certainly have the same question.
I’m 63 and had pain, stiffness, lack of flexibility as long as I can remember. I had 4 hip replacements starting in my mid 40s. I had Back and Shoulder surgery and ongoing sacroiliac joint issues. When my PMR came 3 months ago it was like a tsunami.
The flexibility and comfort with my body that I experienced on Prednisone (50mg) was unlike anything I had before. I started to wonder how far back this had really started and if there were signs way back in my early life. I’m at 25mg now and a fair amount of pain is present everyday until about noon.
Thanks for the question.

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Sacroiliac joint issues and a younger age suggests spondyloarthritis to me --- a type of inflammatory arthritis. It is another autoimmune condition that likes to attack the spine and larger peripheral joints like the knees and hips.

Don't worry ... you can still have PMR when you are older.
----------------------------
https://my.clevelandclinic.org/health/diseases/spondyloarthritis-spondyloarthropathy

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