PMR Flair up From a Virus?

Posted by christopherc @christopherc, Jun 27, 2022

Has anyone with a Polymyalgia Rheumatica had a significant flareup that they think was triggered by a virus such as a cold, COVID-19 or the flu? I have and I was wondering whether anyone else has had this experience and if so, if they know why a virus might trigger a flareup or a relapse.

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I had COVID when I was tapering at 6mg of Prednisone and was experiencing increasing discomfort. My rheumatologist had me hold at that level until I was tested negative, and then began tapering again.

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@pmrnm

Yes, I am confident that I developed PMR about 10 days after my 3rd Covid-19 (Moderna) booster last spring (April 2022). At the time, I was a 55 year-old extremely healthy and active woman, and about 10 days after my vaccine, I suddenly started experiencing a host of disabling muscle pains, stiffness, fatigue in my hips, quads, glutes and upper arms (bilateral) that kept me from being able to do the most basic activities. I was unable to do simple poses in my yoga classes, I could barely reach down to pick up something off the floor, I could not tolerate siting for more than a few moments, I could barely get out of bed in the morning, and I could barely get dressed. I saw my PCP right away, and of course he was mystified. Long story, but it took over 9 months to finally get a referral and get to "see" a rheumatologist (all my appts with him have been via TeleMed on my phone). In those 9 months I was doing my own research on what my symptoms could mean and that is when I discovered PMR as I had never heard of it before (of course!). I had even had a neurological consult that was negative. After I figured out I likely had PMR I next started researching any connections between Covid vaccines and PMR and I found a couple of NIH articles. As soon as I read those I knew that is what happened to me. When I had my first appt with my rheumatologist, he was reluctant to diagnose me with PMR (since I was young-ish and healthy), asking me about 40 minutes' worth of my medical history, but after I explained everything he finally agreed and came around to diagnosing me with PMR. He started me on 20mg of prednisone with a tapering dose for the next few weeks with a follow-up scheduled in 3 months. I immediately felt relief with the prednisone after a day or two, and over the next four months I was able to successfully taper down the prednisone to my current does of 4mg per day. Unfortunately, I have been unable to taper down any further, and I still have slight pain on this dose, so just this week he has prescribed Kevzara for me. I have been approved for it, but I am waiting for my provider to actually fill the Rx and for me to find out how much $ this is going to cost me with my private insurance. The plan is for me to start the Kevzara and taper off the prednisone, but we will see if that works. He did agree that my PMR was very likely caused by the Covid-19 vaccine (Moderna) and he suggested that I avoid any future Covid vaccinations going forward.

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I am also waiting to start Kevzara if I can’t get tapered off of Predisone. I’ve been on 15mg for over two months. Switching the dose to the night made a huge difference in my symptoms.
The cost of Kevzara is high but the drug company has an assistance program that you might want to reach out to. I was able to be approved for full assistance and I have good supplemental insurance to my Medicare.

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My pmr started last Feb, dx’d in April and started on 10 mg April 20. Between the prednisone, anti-inflamatory diet, supplements, and complimentary treatments (hbot, pemf, etc) I did extremely well. About a week before my son’s Sept 9 wedding, my right knee esp started bothering me (one of the most affected areas by pmr). Then the week after the wedding my upper arms became sore bilaterally. Nothing severe. By the end of the week I was a little tired and had the slightest of scalp soreness. Thinking it could be my first flair but because I had been around crowds, tested for covid. It was positive, my first time. It was very mild and pmr like symptoms but probably really covid
symptoms cleared up after a couple days.

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Yes, I believe I had Covid-19 at the end of 2019 into early 2020, although I cannot be sure since testing was not yet available. I believe this was a factor in developing PMR.

I read that Covid-19 enters cells in the body via the ACE2 receptor. ACE2 receptors are mainly found in endothelial cells that line the arteries throughout the body. So Covid-19 damages the arterial linings, and hence can possibly lead to vasculitis diseases, such as Giant Cell Arteritis, which is closely connected to PMR.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7189178/
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How long after you had COVID 19 were you diagnosed with PMR?

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@janiceem

I contracted PMR within a week after my second mRNA Pfizer vaccination (note that Moderna was also an mRNA vaccine). It took over 4 months to diagnose because it was such a mild case that only affected me while I was in bed. As soon as I got up, I was pain-free! I am a registered dietitian and eat a whole foods, organic, primarily plant-based diet, focused on anti-inflammatory foods. If you choose a whole foods diet, you will be eating far more fiber, which feeds your gut microbiome and your gut flora is your first defense for your immunity. Seventy percent of your immunity starts in your gut!
I managed to taper off of my 10-mg. dose of prednisone in about a year, but my PMR flared up again when I caught COVID a few months later. I then had to taper off of a 2-mg. dose of prednisone, which took a few months. I have been pain free for months now.
I definitely will never get an mRNA vaccine and probably won't get any other vaccinations, as well. BTW, I had a friend die from Guillain-Barre syndrome after having a flu shot. I've never had a flu shot in my life and have only had the flu once in the past 30 years!

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janiceem,
That's a shame about your friend. I too have never had the flu shot, and have only had the flu twice in 40 years.
I did a lengthy post a while back on my adverse reaction following my second Pfizer Covid shot in March of 2021. I was 68 years old at the time and never had any type of arthritis. (In fact, I was actually able to run sprints a month before I got the first shot!) The adverse reaction expressed as gout symptoms, for which prednisone and colchicine had only minor and temporary effect on the pain and swelling in my left foot. My uric acid level was normal, but even though gout can occur without elevated uric acid, it obviously was not actual gout, since It took about 5 months to run its course. After that, I was symptom free until late March of this year.
About 2 weeks after a plane flight in March of this year, pain and swelling started off in my left wrist, and over about the next 2 months, spread to numerous other places indicative of various other types of arthritis, but again the initial blood work or other means taken after the symptoms started did not indicate the presence of actual arthritis. It has been established that plane flights (perhaps due to the effects of reduced air pressure) can trigger autoimmune disorders. (But since I didn’t have any autoimmune disorders before the shot, did it create one??) I did two 8-day rounds of prednisone this summer, which worked well (40mg down to 20mg). But the symptoms returned both times. I am now on a lower dose of prednisone (20mg down to 10mg) for a longer period that my PCP prescribed, and will continue on that until I see my new rheumatologist on 10/20. Hopefully, this “round 2” will have run its course by the time I quite taking the prednisone. But if it hasn't, I hope I can convince the rheumatologist to try to determine and attack the cause, and not just treat the symptoms. But I’m not getting my hopes up about that.

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@roswelldad

janiceem,
That's a shame about your friend. I too have never had the flu shot, and have only had the flu twice in 40 years.
I did a lengthy post a while back on my adverse reaction following my second Pfizer Covid shot in March of 2021. I was 68 years old at the time and never had any type of arthritis. (In fact, I was actually able to run sprints a month before I got the first shot!) The adverse reaction expressed as gout symptoms, for which prednisone and colchicine had only minor and temporary effect on the pain and swelling in my left foot. My uric acid level was normal, but even though gout can occur without elevated uric acid, it obviously was not actual gout, since It took about 5 months to run its course. After that, I was symptom free until late March of this year.
About 2 weeks after a plane flight in March of this year, pain and swelling started off in my left wrist, and over about the next 2 months, spread to numerous other places indicative of various other types of arthritis, but again the initial blood work or other means taken after the symptoms started did not indicate the presence of actual arthritis. It has been established that plane flights (perhaps due to the effects of reduced air pressure) can trigger autoimmune disorders. (But since I didn’t have any autoimmune disorders before the shot, did it create one??) I did two 8-day rounds of prednisone this summer, which worked well (40mg down to 20mg). But the symptoms returned both times. I am now on a lower dose of prednisone (20mg down to 10mg) for a longer period that my PCP prescribed, and will continue on that until I see my new rheumatologist on 10/20. Hopefully, this “round 2” will have run its course by the time I quite taking the prednisone. But if it hasn't, I hope I can convince the rheumatologist to try to determine and attack the cause, and not just treat the symptoms. But I’m not getting my hopes up about that.

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roswelldad,
Your story sounds familiar to me. I, too, contracted PMR after my second COVID vaccination in March 2021 and it took months to diagnose because I had no inflammatory markers and it only affected me while in bed! I was extremely healthy up until then, eating a whole foods organic diet and exercising regularly. During this time, my left hip started bothering me, which resulted in a hip replacement in Dec. 2022. I do have a family history of hip arthritis and that hip has bothered me at times throughout the years, but I was doing yoga regularly up until 2021 with no pain. Luckily, my right hip looks good. I do take turmeric (wth black pepper) daily, as well as omega-3's. These are potent anti-inflammatory agents, plus I focus on anti-inflammatory foods and avoid dairy and too much meat, which are pro-inflammatory. I don't have any pain in any joints at this time. I hope this helps you somehow.
Hugs,
Janice

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@janiceem

roswelldad,
Your story sounds familiar to me. I, too, contracted PMR after my second COVID vaccination in March 2021 and it took months to diagnose because I had no inflammatory markers and it only affected me while in bed! I was extremely healthy up until then, eating a whole foods organic diet and exercising regularly. During this time, my left hip started bothering me, which resulted in a hip replacement in Dec. 2022. I do have a family history of hip arthritis and that hip has bothered me at times throughout the years, but I was doing yoga regularly up until 2021 with no pain. Luckily, my right hip looks good. I do take turmeric (wth black pepper) daily, as well as omega-3's. These are potent anti-inflammatory agents, plus I focus on anti-inflammatory foods and avoid dairy and too much meat, which are pro-inflammatory. I don't have any pain in any joints at this time. I hope this helps you somehow.
Hugs,
Janice

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Janice,
We are definitely on the same page when it comes to diet, exercise, supplements, and vaccines. One supplement that you may also take but didn’t mention is glucosamine and chondroitin. I’ve been taking that for almost 30 years. Within a week of when I first started taking it, I remember that it pretty much eliminated some nominal pain and stiffness I had been feeling in my knees. So I've been taking it ever since. Cutting out almost all sugar did the trick, too, when I started experiencing some knee pain and stiffness again about 10 years ago.
I’ll report back after the appointment with the new rheumatologist to see what his objectives are and what therapy he prescribes.
Bob

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@roswelldad

Janice,
We are definitely on the same page when it comes to diet, exercise, supplements, and vaccines. One supplement that you may also take but didn’t mention is glucosamine and chondroitin. I’ve been taking that for almost 30 years. Within a week of when I first started taking it, I remember that it pretty much eliminated some nominal pain and stiffness I had been feeling in my knees. So I've been taking it ever since. Cutting out almost all sugar did the trick, too, when I started experiencing some knee pain and stiffness again about 10 years ago.
I’ll report back after the appointment with the new rheumatologist to see what his objectives are and what therapy he prescribes.
Bob

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Bob,
I also tried glucosamine chondroitin at one time, but it didn't seem to make a difference with my hip pain, so I stopped it. And yes, sugar and processed foods are the worst for your health, although I do admit to having a little fruit pie here and there. I happen to still be a registered dietitian, although I haven't practiced it since 1982. I continue to pay for continuing education courses and renewing my registration status, maybe because I hope that my kids will someday listen to me. (ha, ha)
Hope you will be able to wean off of the prednisone soon. The highest dose I took was 10 mg and it took about a year to wean off of it. Then I had a relapse when I caught COVID last December and went back on 2 mg. Thankfully, I was able to wean off of it within a few months. Wishing you well.
Janice

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I'm in day 4 of flu A and it's not fun. Was wondering whether anyone might have had a flare or PMR symptoms resulting from flu A. I have that weird feeling of scalp sensitivity that I had a year ago when I first got PMR. I'm on 7 mg of prednisone with a monthly 1/2 mg taper if that matters.

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