Is varicella zoster (herpes zoster, shingles?) perhaps a partial cause of some PMR, GCA? Does it fit for you?

[Jan_Noack]

oatext.com/pdf/CMR-2-115.pdf

This fits for me. I'm not sure if it's been on here before or not. I saw on a Facebook PMR group yesterday and just read it.

Shingles and PMR and GCA

I got shingles in 2005 (I wasn't completely well for years (Hashimoto's and something else with my brain I couldn't work out at the time) and pushing myself to study Chemistry at unI..to be able to read and understand and communicate better in my research).

Thinking back, I did have gradual PMR symptoms since then..and really bad after a car accident in 2007.. and eventually could not roll over in bed or sit up by Nov/Dec 2016 when finally diagnosed and given Prednisone. Wondering if this is behind at least part of my PMR (and, at time GCA symptoms but never diagnosed and I don't have now ). I'm complicated as I also have thyroid antibodies and destruction of thyroid via untreated thyroiditis as well..which I suspect plays in there too..and also moyamoya syndrome..which who knows is probably caused by something like this too (perhaps since a teenager)...It's difficult to work out what is what. Just looking for other's opinions on whether this fits for their PMR/GCA.

[DorsetLady PMRGCAuk volunteer]

It’s widely known that there may be/is a connection - in fact the patients information sheet for ZOSTAVAX used to contain some comment about PMR.

If you want to read more posts on here - just type ‘shingles vaccine’ into search box on top banner.

[SheffieldJane]

I think it fits the cumulative picture that most of us have when we look back at the accidents, illnesses, stress, emotional upsets, bereavement. Then bam we are finally felled by the final straw.

My first autoimmune disease was Graves.

[SnazzyD]

What I find interesting in myself is that since being diagnosed with GCA 38 months ago I’ve had shingles 3 times to varying degrees but in spite of that the GCA has improved throughout.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Did you have an anti viral drug each time?

[SnazzyD in reply to DorsetLady]

Sort of.,Acyclovir goes straight through me within two hours. Had it years ago twice when a cold sore (used to get them a lot) decided to take a hike across my face appearing as the GP watched. The first and worst shingles took three days over a weekend for me to realise what it was. Thought it was a pinched nerve because it started directly at the nerve root end before progressing across my back. Tried acyclovir on day 4 but same reaction so rode it out. Didn’t bother with the less severe episodes.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Upset stomach seems to be common side effect -and as you say sometimes that’s worse than original problems.

[SnazzyD in reply to DorsetLady]

The first case was excruciating but it was decided that given the severity of the side effect I probably wasn’t absorbing much.

[Pongo13]

I've had recurring shingles on my right arm since I was 28. I had v stressful job and burned candle at both ends of the day back then. PMR followed second ski accident (broke pelvis then 3 yrs later hip). So yes, I've wondered too.

[PMRpro Ambassador]

The mention of the link has been discussed here before - there is a single study that alleges that all cases of GCA they looked at showed varicella in the TAB samples. There were a lot of weaknesses in the study and, whatever else, it really showed only correlation and not causation. The likelihood of finding varicella in patients of our age is high - very few of our generations didn't have chicken pox. What is more likely is that an attack of shingles is the final (or one of a series) attack on an already deranged immune system. Once the immune system is upset, anything can happen.

[Hidden]

I had a mild case of shingles in 2018 and then a more intense case in 2019 on the upper right side of my head and a couple of months later I had pain in shoulders, etc, and was diagnosed with PMR. I'm convinced Shingles was the catslyst!

[Jan_Noack]

thanks everyone

[Kath567]

Never had shingles but do have other autoimmune conditions. Stress is a trigger for me.

[jinasc]

You might find this interesting and you could fill it in. Their is a link to the stats from there which is up to date.

Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. It could be the biggest online survey (quantisurve.com/cgi-bin/pmr...) of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

see below - hope you don't mind me butting in!

[jinasc in reply to DorsetLady]

Never ever say that again to me. There are people on here, who I never mind butting in and more importantly, trust in keeping me right or correcting errors. For which I give 🙏

[DorsetLady PMRGCAuk volunteer]

link re jinasc comments -

quantisurve.com/cgi-bin/pmr...

[Bibliomaniac]

I had shingles and a lengthy course of acyclovir in June 2018 closely followed by several stomach upsets, (cramps, diarrhoea ) most unusual for me) then very sudden onset of PMR in July . My consultant wrote it all down but said it was coincidental. I just don’t know - but think I’d be reluctant to have the shingles vaccination. ( I’m under age for it anyway in U.K. at the moment.

[DorsetLady PMRGCAuk volunteer in reply to Bibliomaniac]

New vaccine is better - Shingrix - than older one, but it's still a bit of a risk methinks.

[Bibliomaniac in reply to DorsetLady]

Thanks For this; I’ll make a note for future ref.

[Zareda in reply to Bibliomaniac]

I am the opposite.....I had PMR first, then 6 months later a raging case of shingles.

[PMRpro Ambassador in reply to DorsetLady]

Maybe - not tested in autoimmune patients ...

[bunnymom]

I do believe a shingles vaccine plus 3 others at the same time brought on my PMR.

[Missus835]

After not having had an outbreak of herpes since Fall 2020, way prior to the PMR and Prednisone, I have been blessed this week with an outbreak...also hemorrhoids. I'm guessing it all adds up to making my body run down. So now also on Valacyclovir (causing blazing diarrhea) and hemorrhoid cream. The cocktail is like the bottomless glass. Take care.😒