GCA and Valcyclovir for VZV virus

[Iwillwin123]

Hello, Am very keen to know if anyone here has found success with treatment using Valcyclovir to reduce symptoms of GCA or then maybe obtained remission outcomes with Valcyclovir treatment.To others reading this request, please note that this is only a possible theory and not a confirmed line of treatment at all.I am only trying to gain more knowledge.

[SheffieldJane]

I have no knowledge to help you. The only drug I know of to take for GCA and safeguard our eyesight in particular is Prednisalone. The drug you mention seems to be for the Herpes virus. Forgive me, you probably know more than I do if it is a steroid sparer.

[Hidden in reply to SheffieldJane]

See below Jane. 🌻

[Hidden]

Hi, I suspect you have heard that biopsied GCA patients often had Varicella zoster virus in their sample whether negative or positive. This has lead to the suggestion that GCA patients should be given an anti-viral drug like Valcyclovir. However, from what I can find so far there are no significant research trials of this treatment up to 2016, though you may be able to find such studies if you dig deeper. The research paper I looked at (see below) reported that as no such trials existed then that basically the jury is still out. However, importantly there didn't seem to be a suggestion that steroids should be stopped or not prescribed. Rather the inflammation would be treated by pred and the viral aspect by the anti viral on the basis that perhaps it had some part in the development of GCA. So......

"As for treatment of GCA, no trials have yet been conducted to determine whether antivirals and steroids confer additional benefit to steroids alone. ........The presence of VZV in GCA-positive and GCA-negative TAs reflects the possible role of VZV in triggering the immunopathology of GCA and indicates the need for treatment in both groups of patients with antiviral drugs in addition to corticosteroids. Whether oral antiviral agents and steroids are as effective as intravenous acyclovir and steroids, as well as the dosage and duration of treatment, remains to be determined."

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

[Iwillwin123 in reply to Hidden]

Thankyou for the research paper as well as the clear line of reasoning . It seems like an interesting theory though ! And I completely agree that there is no question of discontinuing the steroid therapy in any case ........

Warm regards

[Hidden in reply to Iwillwin123]

It is interesting but I do wonder which came first the chicken or the egg. Also, as someone with pmr I don't fancy the idea of muscle fibre samples being taken from my leg either 😱🤣🤣🤣. I can't remember if that was in this paper or a 2017 one that was very dense to read. I suppose in the end it may be shown that different kinds of virus cause the autoimmune issues and that's why there is a diverse recovery rate. For example Epstein Barr/mono as a "causal" factor. I only mention that virus because I had it years ago. In the end I could probably pose 10 theories as to causal factors but without the money to research them it's dead in the water. Hopefully, some pertinent research will happen soon.

[Lucy2013]

I have GCA. I have read much of the literature regarding GCA, VCZ and the use of anti-virals, which are subject to dispute. However I persuaded my doctor to prescribe me a 2-week course of Valtrex when I was having difficulty getting below a 25 mg prednisone dose, without the return of the temporal headaches. Since then my tapering has been intentionally slow and without any indication of a flare. Note that my GCA evolved about 6-months after getting a virus that left me with a lymph node that has taken a year to nearly disappear...…..perhaps a coincidence.

Good luck

[Iwillwin123 in reply to Lucy2013]

Very interesting ! This is exactly the sort of real time feedback that I am seeking.

Please do help me with the following queries-

1) You took a two week course only once and then did not repeat the Valtrex?

2)what was your dosage in grammes per day ?

3) was it a single or divided dose per day ?

4) Had you taken any tests to confirm the presence of Varicella Zoster virus ?

Too many questions actually but please do take time out to answer them ..... your response is very valuable.

Regards

[castingcollectives in reply to Iwillwin123]

I am being treated for GCA and also have herpes 11.virus since being diagnosed with GCA in January have had several flare ups of herpes after being free for several years Took acyclovir and cleared up always have some.Never thought you mention herpes to my constant but will when next see him.Have had head pain all the while I've been tapering from. 60 now on 17.5 tomorrow consultant doesn't seem too concerned. Roral Free in london is doing research into GCA and people who get it ie..fair skinned sun lovers..as I've mentioned before.

[clieder]

Very interested in this topic and will be following it. Thanks!

[Iwillwin123 in reply to clieder]

Thankyou for your comment. The thing is that the more we all exchange views the better armed we are with knowledge and ammunition to fight this condition with confidence !!

Regards

[HeronNS in reply to Iwillwin123]

One comment. I learned very early that we can't fight this condition. We learn to live with it, make lifestyle changes which can help us feel better, and hope it goes into remission sooner rather than later.

[Lucy2013]

1. Did not repeat, although I asked my doctor for an additional 2-weeks based on literature, but he was hesitant.

2. 1 g twice per day for 2-weeks (28 g total). I did not have any side effects that I am aware of.

3. 5 am & 6 pm

4. No test for varicella. As I noted, I did come down with a virus that produced a large lymph node (& cough) about 6 months in front of getting clobbered with PMR & GCA symptoms. Also note that I had the older and less effective version of the shingles vaccine about 5-yrs ago.

Lastly:

I donated blood in 2-months in front of PMR & GCA symptoms. Red Cross sent me a report that my blood showed something going on that could be indicative of tertiary syphilis or something else and recommended I seek a medical consultation. The something else ended up being PMR-GCA.

[Iwillwin123 in reply to Lucy2013]

Thankyou very much for your response. It is extremely valuable information. And your last line sums it up for most of us. Your last line said “The “something else” turned out to be PMR-GCA ....... “ None of us would have dreamt remotely of this weird and serious health condition .....

Thankyou very much again

Regards