• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Valacyclovir dosage

SOC

Senior Member
Messages
7,849
Thanks @SOC i really didn't know that. It may be similar to a herx but not. I heard that people do get worse before they get better on it though.

My doctor told me this: Dr learner found that patients had a “Herxsheimer” response with worsening of symptoms and a worsening score continuing for two to six weeks after treatment began was a good prognostic omen. Increasing energy score and decreasing symptoms were apparent at the fifth to sixth month of continuing Valacyclovir.

I its not really a bad reaction as such I just feel an increase in my normal main symptoms (sore throat, swollen glands, fatigue, general malaise, stomachache) I don't have any differing symptoms. Should I expect that to be a 'worsening of symptoms' as opposed a bad reaction to the drug?
Dr Lerner talked about the difficult stretch with valgancyclovir (Valcyte), but I don't remember anywhere that he talks about difficullties with valacyclovir (Valtrex). Given my memory, though, I could be forgetting 90% of what's he's said over time. :p Dr Lerner was very clear to me that the common difficult stretch with Valcyte was definitely NOT herxheimer, but it certainly existed and was generally a good sign. If it's an IRIS-like reaction, that would make sense. It would mean your immune system is improving and going after infections. :thumbsup:

FWIW, your reaction sounds a lot like my difficult stretch with Valcyte (not Valtrex) only mine was much worse -- much worse flu-like symptoms than I had previously, shingles, swollen cheeks like the mumps. UGH! It lasted about 10 weeks (although not at it's worst the whole time), but when it was over I felt a LOT better.

If you are seeing a real ME/CFS specialist who knows about antivirals, you should be able to ask her whether she thinks it's an IRIS-like rxn or a bad rxn to the med and get a decent answer.
 
Messages
84
@Mackee yhats a great idea. Thanks. I will look into Zantac although my stomach issues seem to have subsided.

@SOC thank you very much for that info. It's really funny as for the first time in two years I have a cold! I wonder if that's because of the vaktrex?! I also haven't had painful armpit glands for the time I've been on these and I have had that most days for two years!

The main problem I have now and wanted to ask you guys- I really think this is working and I have stuck to 2g a day and hoping to increase soon but I have had the last couple of days kidney pain! Not too bad but definitely there. What should I do? I thought maybe I need to drink much more water.

My ME doctor is good but she's inundated with patients so have to wait months between appointments and can't ask general questions in the meantime
 

SOC

Senior Member
Messages
7,849
...but I have had the last couple of days kidney pain!
This concerns me. I'm going by memory, so I could be wrong, but I believe kidney pain is a bad sign if you are taking Valtrex. You have to drink a lot of water while taking Valtrex... something to do with developing kidney stones. PLEASE call your doctor ASAP and tell her about the kidney pain. If it's nothing, no harm done.
 
Messages
84
Hi everyone-

So, I have been on 4g of valacyclovir daily for 5 weeks now. I definitely feel worse, have worse fatigue, joint pain, twitching and back/between shoulder blade pain. What I've realised is that the pain (which I was thinking was was kidney pain) is the same pain I experienced when I had a bad hiatus hernia. I wonder if the meds are causing an increase in stomach problems which worsens the hernia. I know that you never get rid of this type of hernia once you've got one so I'm hoping its that. I have been concerned that it's related to the kidney but my doctor did a creatinine test and the levels were good only slightly risen from before. I have been drinking extra water too. I also don't have any kidney symptoms apart from the pain.

Do you think it's common to still feel worse after 5 weeks? I'm trying to decipher whether I'm just having a bad reaction or whether these are actually working. I don't want to stop something which could help. My virus titres were high and my main symptoms are malaise and viral related.


Thanks
K
 

SOC

Senior Member
Messages
7,849
Hi everyone-

So, I have been on 4g of valacyclovir daily for 5 weeks now. I definitely feel worse, have worse fatigue, joint pain, twitching and back/between shoulder blade pain. What I've realised is that the pain (which I was thinking was was kidney pain) is the same pain I experienced when I had a bad hiatus hernia. I wonder if the meds are causing an increase in stomach problems which worsens the hernia. I know that you never get rid of this type of hernia once you've got one so I'm hoping its that. I have been concerned that it's related to the kidney but my doctor did a creatinine test and the levels were good only slightly risen from before. I have been drinking extra water too. I also don't have any kidney symptoms apart from the pain.

Do you think it's common to still feel worse after 5 weeks? I'm trying to decipher whether I'm just having a bad reaction or whether these are actually working. I don't want to stop something which could help. My virus titres were high and my main symptoms are malaise and viral related.


Thanks
K
I had a period of feeling worse with Valcyte, but not Valtrex. However, I had 2 years of Valcyte before Valtrex, so that may have something to do with it. I did not have the kind of pain you are having. My worsening symptoms were mostly immune-related, although that does include muscle/joint aches.

Are you taking the valacyclovir with food? From what I hear, quite a few people have stomach issues taking it on an empty stomach. I always make sure to take it on a full stomach, not just a little food.
 
Messages
2,087
Updated MEA summary of the presentation from Jose Montoya at the UK RC conference in Newcastle on Tuesday 13th October 2015:

Professor Jose Montoya, Stanford University, USA, opened the first plenary session on neuropathology with an outstanding presentation that commenced with a one minute silent tribute to his close colleague and friend Dr Martin Lerner, who had recently died. Martin Lerner had worked with Professor Montoya on a number of research studies, including the use of antiviral treatment.


[CS note: During the discussion that followed I pointed out that here in the UK antiviral treatment is not recommended by NICE - so all antiviral drugs are seldom used in ME/CFS and very little interest has been shown in further research or clinical trials involving antiviral treatment. The MEA has met with Roche, the pharmaceutical company that makes this drug, but we did not have any success in trying to set up a UK clinical trial. We clearly need an independent randomized placebo-controlled trial to assess the value of valganciclovir in ME/CFS.

Did Roche outline the reasons they were not interested ?
 

me/cfs 27931

Guest
Messages
1,294
Just for clarification~
Dr Montoya was speaking about valgancyclovir (Valcyte), not valacyclovir (Valtrex). While both antivirals address herpesviruses, they each work better with different subclasses of herpesviruses. They are not interchangeable. In addition, Valcyte has a much higher side effect profile than Valtrex. However, Valcyte is needed for HHV6 and CMV infections for which Valtrex is not very effective.
I'm sure some are like me with insurance that covers Valacyclovir (generic Valtrex), but not Valgancyclovir.

I'm getting a modest response after 3 months at 800mg x 2 per day Valacyclovir with virtually no side effects. I do get some stomach upset if I take it on an empty stomach or just before bedtime, so I avoid those situations. Hoping to up the dose if I can get my doctor to agree.

Eventually, I'd like to try Valgancyclovir (Valcyte), but unsure as insurance won't cover any of it.
 

SOC

Senior Member
Messages
7,849
I'm sure some are like me with insurance that covers Valacyclovir (generic Valtrex), but not Valgancyclovir.

I'm getting a modest response after 3 months at 800mg x 2 per day Valacyclovir with virtually no side effects. I do get some stomach upset if I take it on an empty stomach or just before bedtime, so I avoid those situations. Hoping to up the dose if I can get my doctor to agree.

Eventually, I'd like to try Valgancyclovir (Valcyte), but unsure as insurance won't cover any of it.
What pathogen do you have? If you're treating EBV, VZV, or HSV then valacyclovir is the right medication, so insurance wouldn't cover valgancycovir, which is not the right med for those pathogens. OTOH, if you are trying to treat CMV or HHV6, valgancyclovir is the preferred med, so your insurance shouldn't be insisting on a med known to be significantly less effective for those infections. Of course, if you are getting an antiviral "for ME" then I'd be surprised any insurance company would cover any AV since they are not 'established treatment' for ME.
 

me/cfs 27931

Guest
Messages
1,294
What pathogen do you have? If you're treating EBV, VZV, or HSV then valacyclovir is the right medication, so insurance wouldn't cover valgancycovir, which is not the right med for those pathogens. OTOH, if you are trying to treat CMV or HHV6, valgancyclovir is the preferred med, so your insurance shouldn't be insisting on a med known to be significantly less effective for those infections. Of course, if you are getting an antiviral "for ME" then I'd be surprised any insurance company would cover any AV since they are not 'established treatment' for ME.
I don't know what pathogens I have, and my HMO doesn't seem willing to run any more tests. I have taken valacyclovir for herpes simplex cold sores many times in the past, so perhaps that's why it's covered.

I'm new to this CFS diagnosis, so forgive my ignorance about tests and treatments. My doctor doesn't seem to know much beyond having read IoM report.

Just finding a doctor that accepts my symptoms aren't psychological and getting a CFS diagnosis is simply amazing. All my symptoms, which doctors have long ignored or misdiagnosed, now make sense.

For now, I'm just astonished a doctor finally accepts my symptoms and will prescribe Valacyclovir, and that it's helping my PEM and brain fog a little bit. I haven't gotten beyond that point yet.
 

SOC

Senior Member
Messages
7,849
I don't know what pathogens I have, and my HMO doesn't seem willing to run any more tests. I have taken valacyclovir for herpes simplex cold sores many times in the past, so perhaps that's why it's covered.

I'm new to this CFS diagnosis, so forgive my ignorance about tests and treatments. My doctor doesn't seem to know much beyond having read IoM report.

Just finding a doctor that accepts my symptoms aren't psychological and getting a CFS diagnosis is simply amazing. All my symptoms, which doctors have long ignored or misdiagnosed, now make sense.

For now, I'm just astonished a doctor finally accepts my symptoms and will prescribe Valacyclovir, and that it's helping my PEM and brain fog a little bit. I haven't gotten beyond that point yet.
Since you're in CA, have you considered seeing one of the ME/CFS specialist clinics there -- Stanford or OMI? Since you have a cooperative local doctor, you might be able to get good diagnosis, testing, and guidance from the specialist but have your treatment supervised by your local GP. I doubt your HMO has an ME specialist ;), so you could insist on a referral. You'd only have to go to the specialist once a year. Maybe less if your local GP is willing to consult with specialist and prescribe herself.
 

me/cfs 27931

Guest
Messages
1,294
Since you're in CA, have you considered seeing one of the ME/CFS specialist clinics there -- Stanford or OMI? Since you have a cooperative local doctor, you might be able to get good diagnosis, testing, and guidance from the specialist but have your treatment supervised by your local GP. I doubt your HMO has an ME specialist ;), so you could insist on a referral. You'd only have to go to the specialist once a year. Maybe less if your local GP is willing to consult with specialist and prescribe herself.
Thank you greatly for the suggestions. It's difficult to absorb all this new information and figure out where to go from here. Most days the brain fog is so bad, it's difficult to read, much less type a coherent response.

It's quite clear I've had ME/CFS for almost 4 decades (following a severe viral infection), misdiagnosed as chronic/episodic treatment-resistant depression, with the other symptoms being "all in my head".

If not for the Institute of Medicine report this year, I'd still be in 84%-91% undiagnosed category.

Again, I truly appreciate your kindness and interest.
 

SOC

Senior Member
Messages
7,849
Thank you greatly for the suggestions. It's difficult to absorb all this new information and figure out where to go from here. Most days the brain fog is so bad, it's difficult to read, much less type a coherent response.

It's quite clear I've had ME/CFS for almost 4 decades (following a severe viral infection), misdiagnosed as chronic/episodic treatment-resistant depression, with the other symptoms being "all in my head".

If not for the Institute of Medicine report this year, I'd still be in 84%-91% undiagnosed category.

Again, I truly appreciate your kindness and interest.
If you want to learn more about the CA doctors treating ME/CFS, what testing and treatments they're giving, and how patients are responding, you could start by searching PR for information about Drs Montoya, Kogelnik, and Kaufman.

Valcyte gave me a significant improvement in brain fog and other cognitive dysfunction. In order to get Valcyte, you need to find out if you have a chronic CMV or HHV6 infection. The specialists listed about can help with that.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Can Valcyte and Valtrex be taken simultaneously?

I'm on 500g Valtrex, and have seen modest improvement after 3 months, with no adverse effect.

I'm positive for EBV and CMV, but the primary health Doctor could only prescribe Valtrex. I'm interested in paying $$$ to see an immunologist who can prescribe Valcyte, fingers crossed that my government in NZ or my insurance allows it, and the Doctor knows of it's efficacy. I might try taking some of Montoya's excerpt with me.

I'm feeling very hopeful after reading Montoya's comments and hearing about the upcoming pathogen research they have done, and the 'exciting' results they have produced. It feels like another event with as much impact on cfs as the cytokine study is on the horizon. I can't wait.
 
Messages
21
Location
Scranton, PA, USA
Can Valcyte and Valtrex be taken simultaneously?

I'm on 500g Valtrex, and have seen modest improvement after 3 months, with no adverse effect.

I'm positive for EBV and CMV, but the primary health Doctor could only prescribe Valtrex. I'm interested in paying $$$ to see an immunologist who can prescribe Valcyte, fingers crossed that my government in NZ or my insurance allows it, and the Doctor knows of it's efficacy. I might try taking some of Montoya's excerpt with me.

I'm feeling very hopeful after reading Montoya's comments and hearing about the upcoming pathogen research they have done, and the 'exciting' results they have produced. It feels like another event with as much impact on cfs as the cytokine study is on the horizon. I can't wait.

Do you mean you are on 500 mg of Valtrex per day? (Above you wrote 500g, which I would hope was a typo!)
Valtrex can work well for EBV, but you seem to be on a sub-therapeutic dose of it for this purpose. My specialist wanted me on 1g (1,000 mg) of Valtrex @ 3x/day for 6 mos. for my CEBV.
I could not tolerate the side effects personally and am now on a different AV protocol with Zovirax (acyclovir) but thought the dosage was worth mentioning/discussing with your doctor(s).
Best!
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Yes, I meant 500mg :confused:

Valcyte doesn't appear to be subsidised by the government here unless you are immunocompromised. Looks like around $1000 for 60 x 450mg doses... Yikes
 

SOC

Senior Member
Messages
7,849
Can Valcyte and Valtrex be taken simultaneously?

I'm on 500g Valtrex, and have seen modest improvement after 3 months, with no adverse effect.

I'm positive for EBV and CMV, but the primary health Doctor could only prescribe Valtrex. I'm interested in paying $$$ to see an immunologist who can prescribe Valcyte, fingers crossed that my government in NZ or my insurance allows it, and the Doctor knows of it's efficacy. I might try taking some of Montoya's excerpt with me.

I'm feeling very hopeful after reading Montoya's comments and hearing about the upcoming pathogen research they have done, and the 'exciting' results they have produced. It feels like another event with as much impact on cfs as the cytokine study is on the horizon. I can't wait.
Yes, you can take them simultaneously. Three members of my family have taken them together for years at a time. This does NOT mean every PWME can, or should, do so of course. Careful monitoring is required because you have double the opportunity for adverse side effects.

Your Valtrex dose sounds almost like a placebo dose. o_O I think that's sub-therapeutic for active EBV. You might want to look that up and discuss it with your doctor.

Valcyte went off patent in the US this year, so you might be able to get generic valgancyclovir at a lower cost... assuming your doctor with prescribe it.

I'm not sure an immunologist would be the specialist to talk to if you want to try Valcyte. Wouldn't an infectious disease doctor be more appropriate? That said, if you can get an immunologist to do the right immune tests and they show immune dysfunction, that would strengthen your case for antivirals because it suggests your immune system might not be able to keep herpesviruses under control.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Last edited:

SOC

Senior Member
Messages
7,849
I think what you meant was placebo effect, not placebo dose, as that would imply not receiving any of the drug.
All I meant was that perhaps she thought a low dose would work as a placebo, not that she was actually giving you a placebo. Apparently, I was wrong, though. ;)

I think you're a bit off the mark with your comments on 500mg being a sub-clinical dosage. In fact, it's actually quite well studied.
I'm glad you're satisfied with the dose. If it's working for you, there's no reason to complain. :)
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
Unfortunately I don't have much say in the dosage, as that's what is approved by my Government's department which oversees prescription drug subsidization. The 500mg dose schedule is approved for other herpes virus infection treatments, like HSV, I'm able to get treatment under that guise.

If it were up to me, I'd probably go higher dose, but I'm limited by what's approved by our government unless I want to pay for it myself.

If you look at how this drug works, it inhibits viral replication via viral polymerase during only the lytic phase of EBV replication. It doesn't however prevent viral replication via cellular polymerase during host b-cell division, so it only prevents lytic replication, not replication via normal cellular division events (in which EBV uses host DNA polymerase instead of the inhibited EBV polymerase).

This is why a long dosage shedule is needed. One of the limiting factors here is the half-life of latently infected B-cells, and how many new cells are becoming infected. It could take many years (decades) to clear infection.

Valganciclovir is also a viral polymerase inhibitor, and works via similar mechanisms.