What is the appropriate dose for valganciclovir + valacyclovir?

[brooke]

Looking over various resources online it says that you should take 4g valacyclovir and 900mg valganciclovir if you have additional coinfections (CMV and HSV6) on top of the an EBV infection. Different resources also say that you should add these drug together the the documents I have that show the doses don't say that explicitly. Is that understanding correct that patients should be adding these mega doses together or, if you have all three infections should you just switch to the 900mg valganciclovir and drop valacyclovir?

Does anyone have a resource that shows the dose necessary for adding these drugs together? Should you decrease it by weight?

My doctor is willing to try putting me on these drugs but the protocol we have doesn't clarify this. I've looked through the posts on this site but could only find mostly people's personal experiences/doses.

 

[Jonathan Edwards]

Nobody on this site is in a position to advise another member on drug dosage if your own physician does not know. And it is against forum rules. You are dealing with agents with potentially lethal side effects that may be dose dependent. The responsibility for choosing dosage has to lie entirely with your physician. I assume the dosage depends on the clinical problem and nobody here is in a position to judge what that is.

 

[brooke]

@Jonathan Edwards Thank you for advising of the rules. For clarification, I am not asking anyone to make the decision for me or for my doctor. I am asking for a link to the protocol publicly available online. I've seen these protocols posted on here before, but they don't answer this question.

Dr Edwards, as you know, starting these treatments is suspected to be time sensitive and waitlists to see the few doctors already practicing in this area are long. Do you know of any resources that would help a doctor come up to speed on this?

 

[zzz]

Valganciclovir is one of the most powerful drugs against all herpes viruses. It is also one of the most toxic. For the latter reason, it is usually used only against viruses such as CMV, where there no good alternatives, or cases of EBV that do not respond well to other antivirals. Documentation of its activity can be found in the Merck Manual, under Drug Treatment of Herpesviruses (you have to click the little box in the lower right to get the whole list). The entry for valganciclovir refers back to ganciclovir, which says:

In vitro activity against all herpesviruses, including CMV, but HSV strains that are resistant to acyclovir also cross-resistant to ganciclovir.

There are undoubtedly other references to valganciclovir's efficacy against all herpes viruses (I have seen others), but this would take more searching.

These references imply that valganciclovir should be able to treat all your herpes infections without the addition of other antivirals. I am not making any recommendations here, but simply providing these references as a starting point for further research for you and your doctor.

For dosing, all of the many sources I have seen recommend 900 mg/day for Valcyte, regardless of the number of herpes infections being treated. But of course, as @Jonathan Edwards has said:

The responsibility for choosing dosage has to lie entirely with your physician.

 

[Learner1]

Definitely you will want to follow the advice of your physician.

My insurance balked at 2g of valacyclovir a day, and then we found I have EBV in addition to CMV, HHV6 and HSV2.

My doctor switched me to 1.8g valganciclovir daily, which from what I understand is a very high dose, and my liver function is being monitored every 2 weeks. And, surprisingly, my insurance is happily paying for it without a fuss. I am also getting IVIG to boost immune function.

Working with a specialist who understands your body, your immune system, and your infections is critical. This is not a do it yourself project with an unknowledgeable GP.

 

[brooke]

@Learner1, This is new ground for my GP, but far from a do it yourself project. I have improved significantly since seeing them. Unfortunately, I can't say I have recovered.

One thing we can all agree on is that there are not enough CFS doctors to go around. The fact that my GP is interested in learning about these protocols is something the community should celebrate. I live in an area far from any of the famous doctors on the coasts and while I will be able to pay for treatment with them, many of the patients in my area will not.

If you don't mind me asking, which doctor do you see? I am on the waiting lists to see a CFS specialist but it will be some time before I am able to meet in person. Has the IVIG helped you?

 

[Learner1]

Its a little too soon for IVIG results. Just had my 2nd dose today. First one made me sick for 10 days, then the last 4 days were a step forward from where I'd been, particularly in clearheadedness. Dr Kaufman in CA prescribed my antivirals.

 

[brooke]

@Learner1 Please keep us posted on how it works for you. Dr. Kaufman is my first choice. It seems like many of his patients are actually getting better.

 

[Learner1]

He is wonderful. Worth the effort and expense to see him. Finally have a detailed diagnosis and agenda.

 

[brooke]

@Learner1 I meant to ask, how long had you been sick before Kaufman started you on antivirals? I've heard some patients say their doctors said there was a time limit of about 6 months to a year for them to work and after that there is a very limited chance they will be effective.

 

[Learner1]

I was sick for 2 years and have every hope for being cured eith excellent treatment.

I think the issue is getting a proper diagnosis so you know what problems you're solving. I'm convinced most docs either don't run the right lab tests or they don't know how to interpret the ones they have.

 

[Hip]

Is that understanding correct that patients should be adding these mega doses together or, if you have all three infections should you just switch to the 900mg valganciclovir and drop valacyclovir?

In Dr Lerner's ME/CFS study on Valtrex/Famvir for EBV, and Valcyte for HHV-6 or cytomegalovirus, he does talk about patients that have both EBV as well as HHV-6 or cytomegalovirus; but I cannot see in that paper where he explicitly says that both drugs are given in these patients with multiple herpes family infections.

Lerner's treatment protocol is also detailed in this pdf.


However, in Lerner's follow-up study on EBV-associated ME/CFS, he does explicitly say that:

Coinfection HCMV and HHV-6 CFS requires valganciclovir with valacyclovir.

 

[Wonkmonk]

Documentation of its activity can be found in the Merck Manual, under Drug Treatment of Herpesviruses (you have to click the little box in the lower right to get the whole list).

Many thanks for this list, it is very helpful. I may have missed it, but I think Brivudine is missing on the list, which is super-effective against VZV and HSV-1 and probably to some extent against EBV. But as far as I know, it is not available in the US, so that might be the reason it's not on the list. In Germany, it's the first-line treatment for VZV.

Regarding Valacyclovir, I really did a lot of research, and all information I have points in the direction that serious adverse effects are rare and if they occur, they are entirely reversible in most cases when the drug is stopped.

But of course I can understand that Prof Edwards advocates to be cautious.