How did your PMR begin?

Posted by ctjpmarie @ctjpmarie, Apr 13, 2023

In trying to understand PMR-( my husband has it) …I’m curious to know -if any of you had anything specifically stressful, going on in your life, at the onset of PMR? You know-besides, the normal day-to-day stressors of life?

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

I had a very acute onset after an active vacation in Europe.
After being shunted around 2 airports and flight cancellations
I was delayed and the last one aboard a full jumbo jet.
Felt some aches and discomfort on the flight and arrived at O’Hare
very stiff and sore. I was shaky and weak, unable to lift my luggage.
Called my family practitioner and was seen the next day. We both suspected
PMR as my mother had it at age 80. Sed rate and CRP were very high.
Promptly improved on prednisone and weaned to be done with Rx in 14 months.Fast forward following year after retirement and developed multi focal
lab negative enthesitis. I have had very minimal psoriasis for years.
Doing well -I’m on Meloxicam, Diclofenac gel and icing. No PMR and fully
Covid vaccinated.

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@seniormed

I had a very acute onset after an active vacation in Europe.
After being shunted around 2 airports and flight cancellations
I was delayed and the last one aboard a full jumbo jet.
Felt some aches and discomfort on the flight and arrived at O’Hare
very stiff and sore. I was shaky and weak, unable to lift my luggage.
Called my family practitioner and was seen the next day. We both suspected
PMR as my mother had it at age 80. Sed rate and CRP were very high.
Promptly improved on prednisone and weaned to be done with Rx in 14 months.Fast forward following year after retirement and developed multi focal
lab negative enthesitis. I have had very minimal psoriasis for years.
Doing well -I’m on Meloxicam, Diclofenac gel and icing. No PMR and fully
Covid vaccinated.

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I have psoriatic arthritis newly diagnosed. Thanks for the summary from the Arthritis Foundation. I am seeing my new
rheumatologist this week for a follow up. Good advice, my first rheumatologist could not make the diagnosis.

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Mine just kind of came on. First my upper body started aching. Then pain and stiffness spread to my legs to the point I could hardly walk. I believe it's called the 'Tin Woodman' syndrome - I've rusted and can't move. Nothing I could point to at the time but research I've been doing for my Smoldering Myeloma might indicate that autoimmune disorders such as PMR might be triggered by very low levels of IgG, which I have.

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@seniormed

I have psoriatic arthritis newly diagnosed. Thanks for the summary from the Arthritis Foundation. I am seeing my new
rheumatologist this week for a follow up. Good advice, my first rheumatologist could not make the diagnosis.

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I was diagnosed with reactive arthritis (ReA) long before PMR was diagnosed. There isn't any rule that says you can't have multiple autoimmune problems. My rheumatologist just said it was unfortunate that I had PMR on top of reactive arthritis.

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@janiceem

Yes, I am a dietitian and do believe that diet plays a role in PMR symptoms. I eat a whole foods organic diet and my PMR only bothered me in bed. As soon as I would get up, it went away! I took a low dose of prednisone for about 1.5 years and then got off of it, only to get it again when I caught COVID. Note that I first experienced symptoms after my second Pfizer vaccination.

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Me, too, after second booster...

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My life has been one long episode of major stressful events since I was a child. I'm now 75. When I got PMR I had been watching my husband slowly deteriorate as he dealt with Parkinson's and the year before I was diagnosed was challenging. He died a month after I was dxd. So, ironically, my life is now stress free but I have PMR...

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Here's a link to an article from the National Institute of Health re PMR and GCA,
https://www.niams.nih.gov/health-topics/polymyalgia-rheumatica-giant-cell-arteritis
My maternal aunt got PMR/GCA in the mid 1980s after she injured her back moving furniture. My mother-in-law got PMR/GCA in the mid 1990s shortly after a family reunion that involved a long trip. I got it in 2020, prior to receiving any COVID vaccines and following a foot injury.

According to Cecil and Goldman's Textbook of Medicine, these are relatively rare disorders, (52.5 in 100,000 patients) striking women more often than men, persons older than 50, with the highest rates occurring in Scandanavian countries. Incidence also increases with age.

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I am really struggling with tapering and hoping someone can shed some light on my situation. I was diagnosed with PMR because I had pain in my hips ... only able to hobble around ... and had a 15 on my CRP. This was December 2021. I was put on 20 mg a day of Prednisone and felt GREAT. But I cannot taper. 18 months later, I'm at 23 mg a day and my internist yesterday has just hoofed up the dose to 50 mg a day (with injectable Methotrexate) and no sign of Giant Cell Art. and finally sending me to a Rheumatologist! This is so scary. Bloodwork is getting worse not better.
Internist does not think this is garden variety PMR. I asked him about Regeneron Kevzara that has recently been approved by FDA for treatment for people who can't taper with PMR and he had not heard of it; seeming more concerned about its expense than me? I am Canadian ... can you help me.

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@janettec

I am really struggling with tapering and hoping someone can shed some light on my situation. I was diagnosed with PMR because I had pain in my hips ... only able to hobble around ... and had a 15 on my CRP. This was December 2021. I was put on 20 mg a day of Prednisone and felt GREAT. But I cannot taper. 18 months later, I'm at 23 mg a day and my internist yesterday has just hoofed up the dose to 50 mg a day (with injectable Methotrexate) and no sign of Giant Cell Art. and finally sending me to a Rheumatologist! This is so scary. Bloodwork is getting worse not better.
Internist does not think this is garden variety PMR. I asked him about Regeneron Kevzara that has recently been approved by FDA for treatment for people who can't taper with PMR and he had not heard of it; seeming more concerned about its expense than me? I am Canadian ... can you help me.

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I am not normal, atypical, non classic…..lots of other words like that. My rheumatologist uses these terms to indicate that my PMR symptoms are different than most others. Except they aren’t. Not really. There really isn’t a garden variety PMR and I wish docs would stop looking for one and locking in one set of symptoms as being typical. Like you, My pain is in my thighs and hips. My CPR was at 113. It’s now normal but my SED remains high around 50. I have been on prednisone since December and can’t get below 25mg without a major flare. Methotrexate added but only on it a month so far so not really helping yet. Probably at 3 to 6 months. Doc is ramping it up though and I start doing 25mg of the Metho along with trying to begin again to taper the prednisone down. As many here have said a slow taper is the only way to do it. My next taper is from 25mg to 22.5. I think small, more subtle tapers works best.

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