Last Covid Booster in August 2022 I’ve had severe pain. Probable PMR

Posted by nativeoregirl @nativeoregirl, Apr 8, 2023

It’s been a journey and a difficult one to even get to this point. My arm (right) pain after shot was unbearable. Then it spread to both shoulders and hands. PCP DR told me Lupus but it could also be PMR. Took me 8 months to see the second Rheumatologist who stated probable PMR. She said full treatment is 2 years on Prednisone. Initially when I started on Prednisone it was prescribed by my PCP. Then First Specialist (R) Dr. Wanted me off it which took 3 months. Now 6 weeks off pain was worse than before. I trust the 2nd R. Dr. stated they shouldn’t have pulled me off it in the first place. In addition to this my PCP is not wanting to subscribe my Hydrocodone
And making me jump through hoops to get off of the one thing that has helped. Anyone else experiencing the same or similar? Not sure what to do.

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

Thanks for your comments. Initially, I decided not to tell anyone about my PMR because although I was certain my 4th Covid booster caused PMR, nobody seemed to be talking about Covid boosters causing issues. I decided to do research and see what I could find. I found a few medical reports, but this forum and HealthUnlocked convinced me I am right.
So now when people ask why I am still masked indoors, I tell them I had a reaction to the Covid booster so I can't take any additional boosters and I have been dealing with some some ongoing autoimmune issues as a result. My husband gets to hear me complain about pain and stiffness - thank goodness for him. He has been incredibly supportive through it all.

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@eyewish2bwell

Hi, I'm in Australia and have the same reaction from doctors regarding any connection between Covid Booster shots (Pfizer) and the onset of what's now been diagnosed as PMR. My original doctor's reaction when I presented with the pain was, "when was the last time you had Covid"? I informed him that "I've never had Covid, as far as I'm aware" and suggested a test to confirm so, or otherwise, would be a good idea - he didn't believe it was worth doing. I did finally get a tested and test confirmed I've not had Covid. (The test was only done because I took my husband with me to the next visit and asked again!)
After another visit when my distress and pain levels were obviously noteworthy to him he placed me on Prednisone 25mg and reducing over a period of a about a month. The pain returned when I finished this routine and he finally referred me to a Rheumatologist who diagnosed PMR and, reluctantly, I'm now back on Prednisone 15mg reducing over a 12 month period.
Complicating the issue a bit is I asked original doctor for a bone density test (I'm 65, was very active, vegan) and have been diagnosed with osteopenia in the hips and osteoporosis in the lumbar spine - the Prednisone can impact on this!
Like you, the PMR affects my right arm, shoulder to wrist, hip/pelvic area right and left side, front and back of both thighs and lower back - when not on Prednisone I had no quality of life - the pain was totally debilitating - personal hygiene and just daily activities were challenging.
Prednisone has given me back a level of quality of life I can live with.
I still get varying, usually brief, degrees of early morning pain/discomfort.
How to explain to others what I'm/we're going through? My girls looked it up and just their observations of who I was and who I am now (how I move, a gasp of unexpected pain) has given them some understanding.
Perhaps direct people you need to understand what's happening to this site.
I'm learning to moderate my exercise - when you get to experience "pain free" time it's so damned easy for YOURSELF to forget you ain't what you used to be and the actuality that "oh, yeah, I do have a medical condition, it's just well masked most of the time...slow down girl".
I get fatigued if I overdo the activity and hit the bed for a welcome break.
I try and walk every day for at least an hour and do some weight bearing exercises for the osteoporosis...am limited in range of movement in right arm and weight...I'm right arm dominant...do limited range of movement squats, deadlifts, lunges a couple of times a week with 5kg weights...bicep curls with 2.5kg weights when arm permits and carry the 2x5kg weights up the stairs and down whenever I go up & down.
Everyone will be different as to which exercises, which weights/bands/aids are suitable and how often they can attempt them.
I'm about to seek a dietitian's help to get onto a well-planned diet directed at both the PMR and osteoporosis.
It's difficult at times, but trying to maintain a sense of humour helps me and those around me, watching me...the me I am now.
When trying to explain over the phone to my girls what I looked like attempting to get out of bed in the morning, pre Prednisone, I explained that it's like watching an inebriated, one armed midget trying to breakdance in bed (did I mention I'm all of 5' 1 aaaaaaaand 1/4" TALL).
I wish you, all of you, better days, much better days and thank you all for your comments - I don't feel so alone or a nutter...what we're experiencing is very real.
Thank you.

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Get yourself a bed rail, to pull yourself out of bed. It's a big help!

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I was diagnosed in Nov 2022, they think the Shingrix vaccine triggered the PMR. Got a Rheumatologist right away in December, and I'm tapering the Prednisone down, currently at 8 mg. Been on Prednisone for almost 4 months, and my fingernails are shredding. Any solutions for that? I always thought it was gelatin, but the internet seems to think it's an old wives' tale.

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Also, I've noted that everyone seems to be taking Prednisone - anyone taking methotrexate? My R doc also wanted to do that.

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@don57

Get yourself a bed rail, to pull yourself out of bed. It's a big help!

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Thank you...an excellent idea.

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@bluesteno

Also, I've noted that everyone seems to be taking Prednisone - anyone taking methotrexate? My R doc also wanted to do that.

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Methotrexate (MTX) takes 3 to 6 months to become effective. I for one chose immediate pain relief with the prednisone. As I taper off the prednisone I am introducing my body to MTX. It is not without side affects. You have to take folic acid every day (counteracts some of the MTX side effects) except the one day a week you take your MTX. Your Dr. needs to keep constant vigil on organs it can affect. You take your MTX dose once a week. You can quit MTX at any time. No tapering off needed.
I chose MTX for that very reason. No tapering. Last thing I need is a bad blood report for a damaged organ caused by a drug I have to taper off of.

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@bluesteno

I was diagnosed in Nov 2022, they think the Shingrix vaccine triggered the PMR. Got a Rheumatologist right away in December, and I'm tapering the Prednisone down, currently at 8 mg. Been on Prednisone for almost 4 months, and my fingernails are shredding. Any solutions for that? I always thought it was gelatin, but the internet seems to think it's an old wives' tale.

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I have found applying any good oil (olive, vit.E) to nails and cuticles has helped a lot. But you have to re-apply every time your hands are in water. But it has helped a lot.

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I stupidly listed to nurse giving covid and flu shots and had moderna and flu shots to save time. The aches and pain didnt stop and after a week got worse till I was so stiff and in pain.
Yes I think the shots overwhelmed my immune system. I have read online med articles that there are quite a number of PMR cases after covid shot.

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