Can PMR (Polymyalgia Rheumatica) be induced by vaccine?

Posted by kristem2020 @kristem2020, Jan 2, 2021

Good evening, I’ve recently been diagnosed with PMR. It came on a week after my flu shot October 23, 2020.

Has anyone experienced the same diagnosis after a flu shot?

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

@5990

Seeing a rheumatologist and receiving hydrocortisone which has helped a little. But my life is on hold because of the pain.

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Are you on Prednisone at this time?

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@5990

I can’t be up more than 10 minutes without having to lie down due to the pain. I’m lost as to how to control it. This has taken over my life.

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Are you on Prednisone now?

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There is currently no evidence that vaccinations cause the onset of PMR or other autoimmune conditions. There is evidence that environmental, even seasonal, factors play a roll with possible genetic influences. This comes from both my primary care and rheumatology physicians who I trust implicitly. Do people develop PMR post vaccination? Absolutely. But the same can be said for development after taking a vacation. This does not indicate relevance. Vaccinations are important, especially for those in high risk categories. . If you choose to ignore current science you do so at great risk. My position as a PMR patient is until medical science says otherwise I will remain vaccinated for both flu and Covid. The risk of doing otherwise is simply too great.

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I had flare ups of PMR twice after COVID boosters. Never after a flu shot. Both times I slid out of my bed (which is too soft). I was alone and in the second case on the floor for 6 hours. I had subacute onset of muscle pain and weakness. After 6 hours I had no strength. The next day I could walk ok. Pain lasted about a week. Got short course pred. Told not to take Covid vax again. Too bad because I have lung disease and am 74 but lying helpless on the floor that long was terrifying. I have seen other reports of PMR flare after Covid vac. Protect yourself!

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@trailrider

There is currently no evidence that vaccinations cause the onset of PMR or other autoimmune conditions. There is evidence that environmental, even seasonal, factors play a roll with possible genetic influences. This comes from both my primary care and rheumatology physicians who I trust implicitly. Do people develop PMR post vaccination? Absolutely. But the same can be said for development after taking a vacation. This does not indicate relevance. Vaccinations are important, especially for those in high risk categories. . If you choose to ignore current science you do so at great risk. My position as a PMR patient is until medical science says otherwise I will remain vaccinated for both flu and Covid. The risk of doing otherwise is simply too great.

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You have mentioned before that there is "no evidence" that vaccinations cause PMR or other autoimmune conditions. Yes, there is evidence. Stimulating immunity by vaccination, infection or something your body reacts to can definitely prompt an autoimmune response in some people, involving sudden onset joint pain.

Here is another well referenced source from the US National Library of Medicine:
"Considering that the patients with new arthritis in this systematic review have been vaccinated with COVID-19 vaccine for a period of time (mostly within a week), and how their mechanisms correlate with the pathogenesis of these diseases, it is speculated that there may be a certain relationship between COVID-19 vaccination and the triggering of arthritis. Clinicians should raise awareness of this complication with a view to early diagnosis and appropriate treatment, and further monitoring of the long-term prognosis of the disease is needed."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10055862/

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@trailrider

There is currently no evidence that vaccinations cause the onset of PMR or other autoimmune conditions. There is evidence that environmental, even seasonal, factors play a roll with possible genetic influences. This comes from both my primary care and rheumatology physicians who I trust implicitly. Do people develop PMR post vaccination? Absolutely. But the same can be said for development after taking a vacation. This does not indicate relevance. Vaccinations are important, especially for those in high risk categories. . If you choose to ignore current science you do so at great risk. My position as a PMR patient is until medical science says otherwise I will remain vaccinated for both flu and Covid. The risk of doing otherwise is simply too great.

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P.S. I have no interest in trying to talk anyone out of vaccinations. Everyone should assess their own risks and protect themselves depending on their individual circumstances. Generally I'm pro-vaccination, but I don't like to see anyone's lived experience of sudden onset joint pain and its cause invalidated.

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@lindasor

I had flare ups of PMR twice after COVID boosters. Never after a flu shot. Both times I slid out of my bed (which is too soft). I was alone and in the second case on the floor for 6 hours. I had subacute onset of muscle pain and weakness. After 6 hours I had no strength. The next day I could walk ok. Pain lasted about a week. Got short course pred. Told not to take Covid vax again. Too bad because I have lung disease and am 74 but lying helpless on the floor that long was terrifying. I have seen other reports of PMR flare after Covid vac. Protect yourself!

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Incorrect. First, there are two studies indicating a link between vacinations and PMR and autoimmune disease. Two, there is reportedly like or no reporting of this "coincidence". My doctor never reported my PMR started one week after my flu shot, yet there is a study stating 9.2% of patients had an autoimmune response after vacination and the flu shot was the most common denominator. Here's the irony: (1) we are told no two people are exactly alike; but (2) it is assumed everyone will have the same reaction to a vaccine. I was told the extra dose flu shot was "perfectly safe". NO one can say that, yet they do.

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@joan7

Tested positive for Covid-19 in Feburary, 2020, and was sick for two months (refused to go to the hospital because people were going in and not coming out). Never felt a hundred percent again. In June, 2020, started with a lot of PMR symptoms, which I did not know I may have had at the time. Had the two doses of the Maderna Vaccine in August, 2020 and according to schedule, both which made me extremely ill. Fast forward to June, 2022, PMR symptoms start to become unbearable; the pain in my neck, lower back, shoulders, arms, etc. incapacitated me; was bed ridden on and off, always worse in the mornings. The next 15 months were horrific. 15 Specialists, 3 hospital visits, and finally just received my diagnosis within the past few weeks.....PMR. The good news.....I do not have GCA even though I had double vision for a few weeks on and off. As of tomorrow, I will be weaning from 60 mg Prednisone to 40 mg for a week, then 30 mg for the next week, etc.

If you have been through the weaning process lately, please let me know how you made out. My doctor said she will wean me down to 2.5 mg, however, I may need to have something else added in. Also, please let me know if you had gotten to this point and what they had added in for your treatment.

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@joan7 Your disease progression is remarkably similar to mine. I'm 64 years old, male, northern European descent.

I had what I think was Covid-19 in January 2020 (not tested), was also sick for about 2 months, and also never felt 100% again. It left me in a permanently reduced energy state. I could exercise and be active, but I has to much more carefully manage my energy.

I had Moderna vaccines as well, multiple doses starting in March 2021.

PMR started on January 14, 2023, and it was very severe, with excruciating pain 24/7 that felt like multiple bones were broken in my body, extraordinarily high levels of inflammation (10x higher than most with PMR), severe night sweats, fever, nausea, weight loss, headache, episodes of double vision,... The initial treatment, started 3 weeks later, of 20 mg/day of Prednisone was inadequate. After an emergency room visit on March 2, 2023, due to double vision, the ER doctors upped the dosage to 60 mg/mg. This was continued for about 5 weeks, after which weekly injections of Actemra (tocilizumab) were introduced and tapering of the Prednisone started.

The Actemra shots have been very effective with no relapses and my inflammation scores too low to measure.

I am now (10/7/23) down to 1 mg/day of Prednisone, and will discontinue in it another 2 week. The weekly shots of Actemra will probably continue for another year...

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@joan7

Tested positive for Covid-19 in Feburary, 2020, and was sick for two months (refused to go to the hospital because people were going in and not coming out). Never felt a hundred percent again. In June, 2020, started with a lot of PMR symptoms, which I did not know I may have had at the time. Had the two doses of the Maderna Vaccine in August, 2020 and according to schedule, both which made me extremely ill. Fast forward to June, 2022, PMR symptoms start to become unbearable; the pain in my neck, lower back, shoulders, arms, etc. incapacitated me; was bed ridden on and off, always worse in the mornings. The next 15 months were horrific. 15 Specialists, 3 hospital visits, and finally just received my diagnosis within the past few weeks.....PMR. The good news.....I do not have GCA even though I had double vision for a few weeks on and off. As of tomorrow, I will be weaning from 60 mg Prednisone to 40 mg for a week, then 30 mg for the next week, etc.

If you have been through the weaning process lately, please let me know how you made out. My doctor said she will wean me down to 2.5 mg, however, I may need to have something else added in. Also, please let me know if you had gotten to this point and what they had added in for your treatment.

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Well, midway through the weaning process (I was at 30 mg and was suppose to wean down to 20 mg on September 29th and 10 mg yesterday), and on September 28th, I tested positive for COVID-19. Still pretty sick but able to function now. My son unfortunately tested positive on the 25th, and one of the kitchen workers was send home on the 24th because he tested positive for COVID.

What is really strange, I started have a very strong taste of salt in my mouth again as one of the symptoms. The congestion that I'm expelling has an extremely strong taste of salt (same thing I went through back in June, 2020 after being very sick with COVID the last time for 2 months and never was a 100% after that). But the question is "why is this happening each time I get COVID and how is related?" Any answers or possible theories will be welcome!

What I found to be very scary about this bout is that I was driving my daughter to work (only 5 minutes from our house), and out of no where I couldn't keep my eyes open. Twice on the way to her work place, so my daughter told me, my eyes closed while I was driving (I was not aware of this). A few times on the way back home I think I also kept dozing off because my body would jerk and then I was there just driving which was scary. The only reason I knew the last time that I definitely dozed off was because I drove off the road, apparently hit the curb, and that's when I woke up to my car coming down off the grass/curb. God was watching over me and everyone else that day. I was not completely aware of what was going on at the time, and did not know until I went to Urgent Care that I had a fever over 102, which must of spiked really quick.

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@redboat

@joan7 Your disease progression is remarkably similar to mine. I'm 64 years old, male, northern European descent.

I had what I think was Covid-19 in January 2020 (not tested), was also sick for about 2 months, and also never felt 100% again. It left me in a permanently reduced energy state. I could exercise and be active, but I has to much more carefully manage my energy.

I had Moderna vaccines as well, multiple doses starting in March 2021.

PMR started on January 14, 2023, and it was very severe, with excruciating pain 24/7 that felt like multiple bones were broken in my body, extraordinarily high levels of inflammation (10x higher than most with PMR), severe night sweats, fever, nausea, weight loss, headache, episodes of double vision,... The initial treatment, started 3 weeks later, of 20 mg/day of Prednisone was inadequate. After an emergency room visit on March 2, 2023, due to double vision, the ER doctors upped the dosage to 60 mg/mg. This was continued for about 5 weeks, after which weekly injections of Actemra (tocilizumab) were introduced and tapering of the Prednisone started.

The Actemra shots have been very effective with no relapses and my inflammation scores too low to measure.

I am now (10/7/23) down to 1 mg/day of Prednisone, and will discontinue in it another 2 week. The weekly shots of Actemra will probably continue for another year...

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OMG! I am so happy for you that the Actemra is working for you, and that you're weaned down on the Prednisone to 1 mg. Congratulations, that is such good news.

Your situation and mine seems so uncanny, like we were living the same nightmare. I've just had a temporary glitch in my treatment. I tested positive for COVID just a week ago (28th) and I feel like you know what again. I posted all my symptoms and that strong taste of salt in my mouth is back with a vengeance. So it definitely has something to do with the COVID, because the problem seemed to resolve once I went on the Prednisone (so I assumed it was my PMR, but I'm rethinking that). Let me know what you think about this.

Keep doing well, and keep me updated. I love to hear when others are having an excellent recovery.

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