Alternative treatment: There is some evidence that... - PMRGCAuk

PMRGCAuk

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Alternative treatment

alanbiochem profile image
17 Replies

There is some evidence that a virus may trigger PMR and in the case of GCA the chickenpox virus is found in artery biopsy.

Therefore I started wth a large dose of antiviral 5 x 0.8g/day for 5 days. After 3 days symptoms much better. Three days after stopping symptoms reappeared. Then started 4 x 0.8g/day for 7days and then 2 x 0.8g/day for two months. All symptoms now disappeared.

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alanbiochem profile image
alanbiochem
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17 Replies
PMRpro profile image
PMRproAmbassador

I have read the paper too. But there are also patients for who there was NO evidence of the virus and many people who DO have the virus but not GCA. It is possible that there are different versions of GCA - as it is likely there are different versions of PMR.

SheffieldJane profile image
SheffieldJane

How interesting Alan. Carry on keeping us updated if you can.

Anna135 profile image
Anna135

Which antiviral are you taking?

Judy211 profile image
Judy211

I too read the paper and mentioned it to my rheumy who clearly had not...and knew nothing about it! Hopefully, it will trigger further research. Were you taking any Pred in conjunction? And which anti viral? And how did you manage to persuade your doctor to prescribe it or was she/he progressive enough to offer it? Very interesting.

Gaz227 profile image
Gaz227

This is very interesting but surely if the treatment was so successful the rheumatologist's would be at least testing it on people by now as it would be a no brainier with the time periods they currently have to keep seeing patients for . We live in hope .

Megams profile image
Megams

~Thank you for this interesting information alanbiochem.

Where can this evidence be found please?

Most interesting to also read PMRpro's response as wasn't aware there are different versions of PMR.

Blessings one and all ~

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toMegams

Type in virus and GCA in browser - should bring it up. Study by Gilden & Nagel I guess is what is being referred to.

Lochy profile image
Lochy

Can anyone provide a link to the paper please? I too would be interested to know how you got the anti virals prescribed. anytime I have tried to discuss this with my GP and Rheumatologist they did not support trying it at all!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toLochy

Hi Lochy, see answer to Megams

Lochy profile image
Lochy in reply toDorsetLady

Thanks!

Nap1 profile image
Nap1

Just read lots of info. Regarding this subject but it all dates back to 2015. Am surprised it hasn't come up in the last few years on this forum especially since so many of us have been on steroids for so long. I would like to know if there is any further information or studies since 2015. On a personal level I have had shingles twice once in the eyes as a teenager and once on my back. With the second bout there was anti-viral meds available and it was not too bad. One year after developing GCA I also developed vaginal herpes, which was helped with antiviral meds as well but not a pleasant situation. Can anyone relate to this or does anyone have any further information regarding GCA and antiviral meds? Thank you

PMRpro profile image
PMRproAmbassador in reply toNap1

It has been discussed and I thought it was on here (although it may have been on the patient.info forum).

It is a single paper and hasn't yet been replicated to my knowledge.

Tonylynn profile image
Tonylynn

What about Epstein-Barr (Glandular fever) virus. Would be interesting to know how many PMR and GCA cases have had glandular fever.

HeronNS profile image
HeronNS in reply toTonylynn

Is that what we call mononucleosis? I had it when I was 19. Never had chickenpox as far as I know.

PMRpro profile image
PMRproAmbassador in reply toTonylynn

No Epstein-Barr for me - all these theories have been examined and none confirmed as single causes. It is a cumulation of all sorts of factors. There is no single identifiable cause.

Chicken pox as a child....shingles and epstein barr as adult...

CT-5012 profile image
CT-5012 in reply to

Chicken pox as a child, shingles one year after PMR started. Interesting theory,thanks for the information.

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