The antiviral drug ganciclovir does not inhibit microglial proliferation and activation (2015) Skripuletz, et al.

I took Valcyte for 2 1/2 years. I had suspected infectious onset based on initial fever and symptoms, as well as chronically very high EBV, CMV, HHV-6 antibody titers. Valcyte didn’t have any effect on my ME, though I was working full-time and push-crashing all the time.

Valcyte also had this annoying symptom with me that made my strong ME wired feeling at night and insomnia much worse.

I tested that Valcyte actually was causing this worsening multiple times. Within 3 to 4 days of starting the Valcyte again, regardless of exertion, it made me much more wired and unable to sleep at all at night. Within 2 days of stopping Valcyte, the wired symptom and insomnia reduced back to my ME baseline level.

Valcyte definitely made whatever brain overexcitation and/or neuroinflammation caused by ME much worse. Though this had confused me because I knew of this 2014 paper:

Antiviral drug ganciclovir is a potent inhibitor of microglial proliferation and neuroinflammation

I only searched again recently on the topic and found this 2015 paper challenging the previous findings:

The antiviral drug ganciclovir does not inhibit microglial proliferation and activation

 

Thanks for posting this. I've been on Valcyte for a number of years with a small boost in energy in the beginning. I do have that wired feeling in the evening and trouble sleeping also. I think I'll try taking a break and see if those symptoms improve.

 

Just so we are clear, ganciclovir and valgancyclovir are 2 different drugs.

 

Hi @Milo, no there are really not. Valganciclovir a prodrug for ganciclovir and gets rapidly converted by esterases in your liver to ganciclovir. Many drugs are like this, primarily to make a drug that has better bioavailability.

See on Wikipedia https://en.wikipedia.org/wiki/Valganciclovir under Mechanism of action

 

In my experience, Valtrex worked—it increased my energy significantly and decreased brain fog. But eventually it stopped working. I think we can agree that these drugs definitely do help some people, even though we have no idea of the mechanism involved (probably has nothing to do with viruses).

I may give a Valcyte a short trial—are there folks who have tried both Valtrex and Valcyte and noticed a difference between the two?

@leokitten — you are in the US? Were you able to get your insurance to pay for Valcyte? If so, how?

Thanks

 

Also, FYI pwmecfs are the only ones who report the super wired feeling from antivirals. It is not reported at all as a side effect for normals (lots of side effect data for valtrex as it is widely prescribed).

Here is Nauviaux on a proposed mechanism for antivirals in me/cfs

https://www.omf.ngo/2016/09/09/viruses-and-cfs-statement-by-ron-davis-and-bob-naviaux/

 

@Jaybee00
Genentech has an assistance program that a number of patients have used to receive Valcyte. As long as you make under I believe $100,000 a year and have a doctor
willing to prescribe it.

 

Thanks @Ron. I’ll look into this...or travel to India....

 

That article was updated here
https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/

 

My insurance plans through my employer had always paid for it without any issues. I started taking it when it was still only brand name and Dr. Levine only had to do a simple prior authorization. When it went generic (which it has been for some time now) insurance didn’t even ask for a prior auth.