1. < Polymyalgia Rheumatica (PMR)

GCA, zoster, and (maybe) PMR

Posted by pkalkstein @pkalkstein, Oct 14, 2023

Through searching here I found posts relating shingles and Shingrix to possible onset of PMR/GCA. But looking at it from the other direction (fighting our disease rather than searching its origin), I found the referenced paper (provenance unclear) fascinating. Does anyone know of the use of acyclovir to treat GCA or PMR? I know there is speculation about a virus as the cause of these related diseases, but I didn't think a virus had been identified. This is somewhat speculative, but there is a case study.
https://www.oatext.com/pdf/CMR-2-115.pdf

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krueg | @krueg | Oct 14, 2023

Interesting, over never heard of this drug

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redboat | @redboat | Oct 15, 2023

Interesting. By coincidence, I am taking acyclovir right now, 400 mg x 3/day. We'll see if it make a difference.

BTW, for background, I was diagnosed with PMR and/or GCA around Feb 2, 2023, and after an initial 20 mg/day of Prednisone was ineffective, the dosage was increased to 60 mg/day. That was on March 2, 2023. Weekly shots of Acterma (tocilizumab) were started about 5 weeks later, in early April, and Prednisone tapering was begun. Now, as of 10/15/2023, I'm down to 0.5 mg/day of Prednisone. The Actemra shots will likely continue for another year or so.

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1 reply
marieameehan | @marieameehan | Oct 16, 2023
In reply to @redboat "Interesting. By coincidence, I am taking acyclovir right now, 400 mg x 3/day. We'll see if..." + (show)
@redboat

Interesting. By coincidence, I am taking acyclovir right now, 400 mg x 3/day. We'll see if it make a difference.

BTW, for background, I was diagnosed with PMR and/or GCA around Feb 2, 2023, and after an initial 20 mg/day of Prednisone was ineffective, the dosage was increased to 60 mg/day. That was on March 2, 2023. Weekly shots of Acterma (tocilizumab) were started about 5 weeks later, in early April, and Prednisone tapering was begun. Now, as of 10/15/2023, I'm down to 0.5 mg/day of Prednisone. The Actemra shots will likely continue for another year or so.

Jump to this post

Your story is a very interesting one !!!!
It has been such a brief time since you were diagnosed and treated !!! How do you find the Actemra???
Than you !

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1 reply
joybannister | @joybannister | Oct 23, 2023

I've wondered the same thing. Also, I looked you up to ask how you are doing on LDN. Has it worked for you? I got a prescription today and am really hoping it helps since prednisone is not working well for me. Apparently I'm resistant.

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pkalkstein | @pkalkstein | Oct 23, 2023

LDN has done great things for me: wiped out my neuropathy and sciatica and made me optimistic (like CBD). BUT it hasn't allowed me t get off of prednisone. I have had almost no pain, but some stiffness, since starting LDN, but I also had a bad flare when the doctor told me to reduce too fast.

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1 reply
joybannister | @joybannister | Oct 23, 2023
In reply to @pkalkstein "LDN has done great things for me: wiped out my neuropathy and sciatica and made me..." + (show)
@pkalkstein

LDN has done great things for me: wiped out my neuropathy and sciatica and made me optimistic (like CBD). BUT it hasn't allowed me t get off of prednisone. I have had almost no pain, but some stiffness, since starting LDN, but I also had a bad flare when the doctor told me to reduce too fast.

Jump to this post

Well, I could use a little optimism since it might not work for my PMR. Darn. I have tons of pain. Maybe I'll have a better outcome than you for the PMR. How much prednisone are you taking at this point?

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pkalkstein | @pkalkstein | Oct 24, 2023

I am working down from 7.5 to 7mg. I can't really say LDN hasn't helped with pain, since I am not feeling much pain, more stiffness, but not bad. I guess I was hoping that LDN would replace the pred, and maybe it wikll when I get some adrenal action.

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redboat | @redboat | Oct 26, 2023
In reply to @marieameehan "Your story is a very interesting one !!!! It has been such a brief time since..." + (show)
@marieameehan

Your story is a very interesting one !!!!
It has been such a brief time since you were diagnosed and treated !!! How do you find the Actemra???
Than you !

Jump to this post

The Actemra has worked very well for me, with no noticeable side effects, and no relapses as I taper off Prednisone. I'm now Prednisone free!

The main danger with Actemra is liver function. My liver scores are slightly elevated by Actemra, with ALT and AST around 20. This is still in "normal" range but not the more optimal score of around 13 that I get when all is good. Blood tests are being used periodically to monitor liver function.

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marieameehan | @marieameehan | Oct 26, 2023

I am delighted to hear of your progress !!!!
How are your numbers re CRP and SED ???
Domyou hVe healthy bones at tihis stage?
How long has your journey been from the first day of PMR ???
Thank You
PS....domyou eat oatmeal daily ??

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