Treatment for PMR and GCA your rheumatologist pro... - PMRGCAuk

PMRGCAuk

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Treatment for PMR and GCA your rheumatologist probably won't mention

jy6174
jy6174

If you PMR or GCA (I have had both ) do yourself a big favor and look at the neurology and ophthalmology research literature suggesting that many if not most episodes of GCA are triggered by Varicella Zoster the virus that causes chickenpox and shingles.

I was lucky and became a patient of neurologists at the University of Colorado Anschutz Campus where I was started on antiviral therapy which immediately began my recovery . I have not had symptoms of PMR or GCA for 3 years.

I can almost guarantee that your rheumatologist will be negative . All I would suggest is that you try an inexpensive and safe antiviral , valcyclovir used for other similar viruses as well and available generically , in addition to "standard therapy" an see for yourself if it helps . Most of us are in the last decade or so of our lives and have little to lose and certainly do not have decades to" wait until we have more studies". SEE articles by Don Gilden MD and Maria Nagel MD in medical literature , just google them.

James E Young MD , mt USA

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DorsetLady
DorsetLadyPMRGCAuk volunteer

Here’s a couple of links for those interested, and able to comment on findings -

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

There are more.

Hidden
Hidden in reply to DorsetLady

Cool, thanks!

Dorsett Lady,

Thank you for the studies/articles, they are fascinating and helpful.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to enan-illuc

Pity the originator didn’t supply links, maybe couldn’t!

Hidden
Hidden

WOW! Thank you jy6174 !!!! That is really quite interesting and worth looking into! Cheers!

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

You might like to take a look at this..............and perhaps fill both in?

I had shingles before my GCA. Seemed to lead right into it with flu like symptoms.

So that live Zoster vaccine I had one year before my PMR symptoms developed might be connected? Interesting.

I blame EVERYTHING on Shingles. Told my doctor if I got it again to put me in the HX & induce a coma. Then got the shot. Double whammy?

What I don’t understand is, given that it lives in the nerve endings and you can’t get rid of it, what is the point of antiviral sunless you have an acute flare of it? I’ve had chicken pox as a kid, never had shingles but have had two courses of high dose Acyclovir for runaway cold sores (Herpes simplex) in the last 10 years. I still got GCA. Interestingly, before the GCA flared up, I had had 6 months of repeated large cold sores, though it is a different but similar virus.

So if they’re saying that someone who presents with GCA or PMR should be treated with antivirals, it may just be that it’ll stop that particular manifestation but it could come back like shingles can. Still better than loads of Pred, though the antivirals ended up giving me bad d&v at high dose.

The vaccine I wouldn’t touch with a bargepole because two rare side effects are PMR and chicken pox. I’ve seen a handful of people with neuralgic pain after the vaccine during the years I used to give it.

I had the shingles vaccine 3 yrs before PRM

Polywotsit
PolywotsitPMRGCAuk team member

Studies looking for a biomarker for GCA and analysing hundreds of samples from biopsies and bloods have found no consistent evidence of any particular infection triggering the processes that cause GCA. And to.say that most of us are in the last decade of our lives is plain wrong.

PMR2011
PMR2011 in reply to Polywotsit

Here here! And to say that someone in the last decade of their life doesn’t have much to lose must be from someone who is NOT in the last decade and somewhat ignorant. Conscientious thoughtful decisions are required no matter how old!

PMRpro
PMRproAmbassador in reply to Polywotsit

I started to reply saying that and then decided to wait. I sincerely hope I have more than 10 years left - even if I have had PMR/LVV for 14 years already!

And I agree with PMR2011!

PMRpro
PMRproAmbassador in reply to Polywotsit

The work he refers to was a single paper - with loads of flaws so it is difficult to draw iron-clad conclusions.

Just about to complete the tapering off steroids (prednisone) for GCA - after 16 months, but hospital rheumatologist needs to assess progress first - this has been set for later this month. Most likely he will require that I have the shingles vaccine and a 'flu shot - and an eye test. All are free of cost.

I live in New Zealand.

Blast- I just composed a long reply to this and it has disappeared before I could post it!

So briefly. Suffered undiagnosed PMR for at least 4 years, no raised blood markers so GP not convinced I was really ill!!! (she should have been in my body!)

End of last year had incredibly painful and debilitating bout of shingles which was treated with two week course of anti virals. After about a month I felt better from the shingles, apart from ongoing pain at site of rash. Returned to GP who eventually agreed to Rheumatology appt, prescribed pred, miraculous relief from many PMR symptoms literally overnight.

So...is there a link? Would a longer course of anti virals have helped the other symptoms I had been suffering all along? Did I get shingles because I was 'run down' from the PMR, or because they are both auto immune problems and my immune system is shot? Lots of questions.

Interesting, thanks for posting. I wish a brilliant scientist would join up all the dots.

Have had PMR for 7 years and GCA for 1 1/2. Never had shingles, don’t get cold sores, never had the shot and did not have “flu” before onset of symptoms. I did have chicken pox as a child. Interesting tho, about 3 years ago I was prescribed Doxcycline for a bullseye red spot (? of Lyme) and swore my PMR symptoms were much better when I was on it.

PMRpro
PMRproAmbassador in reply to PMR2011

That is a not uncommon experience

My sister has RA, if and when she takes an antibiotic, her pain is less....of course the doctors don't agree!....

Absolutely fascinating ! Good for you !

jy6174,

I got the Shingles vaccine a few months before I got GCA and PMR and I also got Shingles after the shot and while I had/have GCA and PMR . I am going to talk to my Rheumy about this. Thanks for the information.

I got the shingles vaccine two years before being diagnosed with PMR.

Hello,

I read with interest the input given by you about Varicella Zoster medication and GCA.

It will help me greatly if you clarified the following doubts -

1) What was your dosage of Acyclovir ?

2) How long did you take it for ?

3) Did you have any side effects ?

I intend to try out this approach and hence this detailed enquiry.

Thankyou very much.......

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