COVID and/or vaccine-induced PMR

[sferios]

Hi everyone,

I met with my rheumatologist recently and she said some interesting things about what she and other rheumys in her department are seeing with regards to COVID-induced (and COVID vaccine-induced) myalgias, including PMR.

Basically, what she said is that the patients she sees who present with autoimmune myalgias following either COVID or a COVID vaccine tend to be worse at the beginning, but then generally fair better over the long run, than patients with what she called more "constitutional" myalgias (meaning not triggered or induced by COVID or the COVID vaccine.)

She said this is true for both PMR patients as well as myositis patients.

To be specific, for PMR she says that patients who's onset happened after COVID or a COVID vaccine tend to require higher initial doses of prednisone, but that they *generally* are able to reduce their dose without flareups more quickly.

For myositis triggered by COVID or the COVID vaccine, she says that despite bad initial presentations, these patients generally respond better to treatment in the long run.

She qualified this by saying it doesn't apply to everyone (and for myositis it doesn't apply if the patient tests positive for any of the classic myositis auto-antibodies). But she says this is what she and the other rheumy's in her department are seeing in general.

She thinks this may be why I am requiring a higher initial dose of prednisone than many other PMR patient she has, but she is hopeful that my case may self limit more quickly.

Now, I would like to believe her. But I am a bit skeptical.

For one, I live in New Mexico, which is one of the least populated states in the US, so her patient sample size I am sure is small. Also, COVID and the COVID vaccines haven't been around very long, so it doesn't seem to me there has been a lot of time to assess things. To me, her statements seem more like a hypothesis than a firm conclusion.

My appointment at the Mayo clinic is coming soon (April 27th), and I will certainly ask the Mayo rheumy what he thinks about this. But what do *you* think? I am curious to hear other people's opinions and personal experiences.

Thank you.

[DorsetLady PMRGCAuk volunteer]

There are studies out there online on the subject so have a look - this is just one -

cureus.com/articles/100523-...

But as PMR lasts at least 2 years (and much longer in many cases) not sure there are any meaningful studies to prove if treatment is significantly different or remission quicker in Covid/vaccine induced PMR.

[Missus835 in reply to DorsetLady]

I agree. I've not had Covid so it's not the 'long-term' variety of that.

[PMRpro Ambassador]

Not too many Swedish heritage bunnies in New Mexico that I noticed either

But I have said something similar recently - people who developed "PMR" as a result of the Covid vaccine seem to do better than average in reducing the pred dose. Covid is another matter - can you differentiate between PMR and Long Covid?

[sferios in reply to PMRpro]

My rheumy lumps covid vaccine-induced PMR into the "long covid" category. I don't agree with her on this. I got covid last June and did not have any PMR-like symptoms afterwards. (I also totally recovered in a few weeks).

Then I got the Moderna covid booster in January and immediately got PMR. I don't think what I have is rightly termed "long covid."

[PMRpro Ambassador in reply to sferios]

No, me neither ...

[Missus835]

I can only relate my experience with vaccine induced PMR. First Pfizer jab May '21. Pains in neck, shoulders and between shoulder blades, waking with migraine-like headaches began a couple of weeks (at the most) after the vax. Went all summer thinking it was my pillows and bought many new ones. In August '21, 10 days after second jab, I was unable to get out of bed because the pain had been exacerbated. Finally got up, into a hot bath and couldn't get out. My daughter had to help me out of the tub. Went to my then GP, who diagnosed me with "old age". Tried chiro and physio...nothing helped. Finally conviced the GP to send me for blood work because it could possibly be RA (this recommended by my Pharmacist). CRP and SED levels extremely high. Called GP who got an urgent referral to a Neurologist here in Halifax, NS who diagnosed PMR in Jan. 2022 and I was immediately put on 20 mg. Pred.

Had a GCA scare in Jan. 2023 and was increased to 60 mg. Pred. Biopsy was negative. Now reducing from the 60 mg. I am down to 32.5 mg.. Prior to the GCA thing, I was at 14.5 mg. Pred and was doing okay and reducing very slowly.

I highly doubt that because it was vaccine induced it has sped anything up. PMR has a mind of it's own and we here tend to listen to our bodies as well as the very learned and experienced moderators, volunteers and our Ambassador, who have gone through PMR/GCA or both. In general, Rheumies and GP's tend to form their own hypothesis (when knowing very little about PMR) and I think your skeptism is well founded.

[sferios in reply to Missus835]

Thank you for sharing your experience. I thank our lovely expert women here all the time, but replies like yours, just sharing your experience, are equally as helpful to me. We're all in this together so thank you.

[musclesinflamed in reply to Missus835]

I'm having a bit of trouble with the word "induced". Are you meaning "caused" or "triggered". From what I've learned, and I'm definitely not a medical person, nobody knows what "causes" PMR but it seems to be "triggered" by stresses like viruses and many others. While one of the possible triggers for some may have been any vaccine, it probably would have manifested with some other incident. PMR was around prior to Covid or the Covid vaccines.

[Hidden]

I find this re "vaccine induced PMR" intriguing. My PMR came out of nowhere with intense, excruciating and immobilising pain in the pelvic girdle and within a week or so, the shoulders, neck and head. This occurred about three days after an AZ vaxxing. For those three days I was flattened by extreme fatigue, sleep and flu like brain fog. As I came out of this fog, PMR hit me like a brick in the face. I went three weeks before I found a GP that knew what it was. God bless him. The others were hopeless to the point of medical disgrace.

Big thank you to all of you on this forum. You are invaluable to us fellow sufferers. God Bless your patience.

[PMRpro Ambassador in reply to Hidden]

In the UK there have been 59 deaths linked to the vaccines - compared to nearly 58 million people vacccinated in the UK

ons.gov.uk/aboutus/transpar...

coronavirus.data.gov.uk/det...

59 deaths due to vaccine compared to the number of deaths in unvaccinated persons does suggest that the risk of NOT having your claimed "inadequately tested" jabs was an awful lot higher than the jab itself, In fact, the vaccines underwent exactly the same testing before release as any other vaccine - it was just that the development was speeded up by companies taking massive financial risks and running different pre-human stages of testing in parallel rather than sequence and there were none of the usual hold-ups getting funding or approvals, We could have cures for many things if that applied for all research!

statista.com/statistics/128...

Of course, conspiracy theorists will pick up on the figures that suit them and ignore the others.

PMR can be triggered by other vaccines - notably shingles and flu, should ALL vaccines be stopped because they might cause PMR? And Covid itself results in a high incidence of Long Covid, many cases of which are infinitely worse than even my 18 year journey with PMR - which obviously had nothing at all to do with a vaccine of any sort since I was too young to qualify for one.

[mvh4747]

My only advice is to get off Prednisone as soon as possible. I have been on it for 5 1/2 years for PMR. I have lost "muscle mass" in my legs. Now doing PT to RETAIN what I have as REGAIN is not an option.

[DorsetLady PMRGCAuk volunteer in reply to mvh4747]

If someone’s PMR is alive and kicking the advice to get off Pred asap is not helpful.

No one wants to be on Pred longer than necessary-but to control the illness you need to be on the right amount -or you just end up in a worse place .

[PMRpro Ambassador in reply to mvh4747]

I'm sure you mean well - but getting off pred as soon as possible is the aim of everyone but if the illness is still active - you need pred or you are back to the status you were in pre-pred.

However, regain IS an option otherwise Skinnyjonny wouldn't have been able to get from wheelchair with PMR pre-pred to nearly the top of Annapurna IV a few years later.

healthunlocked.com/user/Ski...

[Seacat30]

That was fun! Does being 'parrolised' turn you into a parrot?