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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jy6174
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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.
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.
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!
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!
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.
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.
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.
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.
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