Infections triggering auto immune conditions - PMRGCAuk

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Infections triggering auto immune conditions

Suzita76 profile image
11 Replies

I suppose more pertinent to this whole question is whether or not GCA sufferers have had Chickenpox ( I guess most will have, especially bearing in mind the age profile- there was no CP vaccine in the UK when most of us were children, so we just caught it! ). Since it is the same virus as Shingles ( Varicella zoster), it is probably lurking in many of us waiting either to re- immerge ( as Shingles) or be attacked by our immune system in the parts of our bodies it is hiding in, e.g. temporal arteries... what triggers either of these scenarios is what lots of research is needed to find out.

There are a great many conditions thought to be triggered by infection, be it viral or bacterial, where our immune cells attack parts of the body wrongly recognised as alien- such as heart valves, skin cells, kidney nephrons etc. which seem to have proteins/ antigens very similar in structure to an antigen present in the bug.

For instance, several strains of the bacteria Streptococcus (such as Streptococcus pyogenes) can cause severe (“Strep”) sore throats/ tonsillitis, followed, if you are very unlucky, by the triggering of an auto-immune response leading to conditions such as Rheumatic heart disease, pyelonephritis, or “guttate” psoriasis. (I suffered the latter 38 years ago and was without most of my skin for 7 months).

Type 1 diabetes in children is now also thought to be triggered by a viral infection (enterovirus) - here’s a link to this research.

google.co.uk/amp/s/www.medi...

Whether or not infections are a trigger for GCA/ PMA, it seems to me than the Shingles vaccination programme in the UK is flawed; people need to be vaccinated at a much younger age. A colleague of mine got shingles 18 months ago and he is still having to have morphine patches for the intense pain (and one in a thousand people aged over 70 who gets Shingles will die from it). The vaccine is also much less potent the older you are.

Sorry, I seem to have drifted from talking about GCA/ PMA!

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Suzita76
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11 Replies
Daisychain12 profile image
Daisychain12

Suzita your post is very interesting. Many of us seem to have had shingles or chicken pox. I have had both and shingles four times. One time it went into my eye and I nearly lost the eye. Another time it went into my brain and I got meningitis. I think one day many more links will be found between PMR and viruses. Thank you for this discussion xxxxxx

jinasc profile image
jinasc

If you are interested you just might like to take part in the following ; both of which have been running for some years now

International Survey PMR and/or GCA

We collaborated with PMR sufferer Elliott Greene from USA, in devising an international online survey for suffers of PMR and GCA. Elliott is an ex immunologist and co-owns a software company specialising in online surveys.

The survey is totally anonymous and the information accrued can be viewed free of charge to anybody. We hope this survey will aid future research projects.

Please take approximately 10 mins to complete the survey.

To complete the survey, please click here. quantisurve.com/cgi-bin/pmr...

To see the survey report please click here quantisurve.com/cgi-bin/pmr...

GCA : This survey relates specifically to GCA.

The Marijke Stichting Foundation Netherlands.

Please click here marijke-foundation.eu/Websi...

Omanain profile image
Omanain in reply tojinasc

I completed this survey but I am a little embarrassed!! I am a 71 year old woman, had raised blood markers, bilateral pain and stiffness in shoulders and hips and responded within hours to prednisolone. Classic old school PMR!! As I was only diagnosed with PMR in April this year I don't know if it will burn out in 1-2 years. Nice thought though!!

jinasc profile image
jinasc in reply toOmanain

Thank you Omanain, every person who fills in that survey is helping.

Welshmerlin profile image
Welshmerlin in reply toOmanain

I've also completed the survey. Very interesting to read. Do you know if the report is still being updated as it says "Report Date = Jun 21, 2023" ?

PMRpro profile image
PMRproAmbassador in reply toWelshmerlin

The link above didn't work for me today - but this is the website

marijke-foundation.eu/

and it presents a list of symptoms - if you have 5 or more, then PMR should be considered as a diagnosis.

You could also contact them and ask about their work.

SheffieldJane profile image
SheffieldJane

I haven’t had Chicken Pox or Shingles. I had my immunity tested when my grandson got it because I was looking after him. I was found to have the anti bodies and was therefore immune. My PMR followed a period of unrelenting stress caring for my mum with dementia and other unavoidable legal problems. It was as if I just broke. I think I had it for quite a while before diagnosis. I think there will be multiple causal factors and triggers for these diseases. Diagnosed March 2016 currently in the midst of a flare, having been down to 6 mgs, that I believe was triggered in part by a combination of stress, a chest infection and the flu jab whilst still ill.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

If you have the antibodies that means you have been exposed to CP at some point in the past - even if you don't remember and it was very mild because your immune system was up to it and reacted to the virus quickly enough to stop the infection developing to a level where it was obvious.

SheffieldJane profile image
SheffieldJane in reply toPMRpro

I remember longing for the drama of the spots. Strange kid.

maria40 profile image
maria40 in reply toSheffieldJane

My elder daughter had only two spots while her younger sister was covered in them. Elder daughter did have the flu-like fever at the beginning but quickly recovered. Had I not been looking out for spots and symptoms I might have assumed that she had escaped. Perhaps the same was true for you.

PMRpro profile image
PMRproAmbassador

There is no single cause of either GCA or PMR - there have been suggestions of single causative factors in the past but none can be identified as common to every patient. It is most likely a cumulative effect of many things which put stress on the immune system and eventually one thing breaks the camel's back - and the immune system goes haywire and cause an autoimmune reaction. If it is a single infective factor - it hasn't been discovered yet.

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