Valcyte, Valtrex, and Famvir experiences -- Let's talk

[IrisRV]

I was on Valcyte two years, off two years, back on about two years and now I'm off again. Valcyte is the treatment that did the most towards reducing my symptoms and improving my quality of life. It was not a cure, but it was a big step towards normal function.

I always took it under the supervision of an experienced physician and had regular monitoring labs. It was a great medicine for me, but I understand it's not for everyone.

I've also taken Valtrex long-term to my benefit, although I'm off it at the moment also.

I'm too tired tonight to go into details. Maybe tomorrow. I'll be happy to answer questions.

I hope other people will share their Valcyte, Valtrex, and Famvir experiences here too -- good or bad. If anyone has experience with any other antivirals, that would be interesting as well.

I'd like to see this thread continue as an on-going resource for patients who are wondering about or considering taking these medicines. It would be helpful to have everybody's experiences in one place so new patients don't have to dig through a bunch of unrelated threada for information on antivirals.

Please let's keep this informational, not confrontational. This should be about the experiences of people who have taken these medications and questions from those interested in them. It shouldn't be a place where patients have to defend their treatment choices from those who think they know better than the patient. If you haven't taken them, this is not the place for you to criticise them. Please take that discussion to another thread where people who care can join you in a lively confrontational discussion on the merits (or not) of antivirals from the point of view of those who have never taken them.

 

[Who Me?]

I started acyclovir in 2012. My doctor would not rx them but she knew I was on them and was monitoring me. I got for me, what was a good improvement. The main being subtle increase in energy. I could longer with out crashing

Then my np prescribed valtrex. Sadly I could not take it. It totally altered my personality and I became an enraged lunatic. Once I stopped I was fine.

We switched to famvir 1000 mgs and I have not had a problem on that. I can't see it his helpng in any noticable way but I do know it is keeping me from getting worse and keeping viruses at bay. High doses got me through 2 viral reactivations.

I did a trial of 450 mgs Valcyte also being monitored by a docfor. I could not up the dose at all without serious gi issues too painful to stay at that dose. Nine months later I noticed no differnce with Valcyte although my cmv IgG numbers went down. I stopped it

All my labs were always fine.

I was positive IgM for cmv and hhv6 which warranted use of antiviral. I do want to try Valcyte again and will bring it up when I see my immunologist in April

 

[San Diego]

I tried Famvir for nearly a year, but could not get to a therapeutic dose without my liver enzymes elevating. While they never got dangerously high, they were trending upward, out of the normal range, so I had to discontinue.

My doctor kept me on a low dose Famvir for about a year, with zero improvements. Looking back, I think I actually worsened during that period.

I sought a new doctor, and have now been on Acyclovir for nearly a year, again with zero improvements.

I was positive for active EBV (very high) and HH6 (high) and have been diagnosed ME/CFS by 3 top doctors in the field. Both viral titers improved on AV’s but did not correlate with any improvement in my condition.

 

[Who Me?]

@sdsu I only noticed an improvement on acyclovir (I was in slightly better shape) but I still believe that at the very least, the Famvir is keeping me from getting worse.

Stupid disease.

 

[Cort]

I was on Valcyte two years, off two years, back on about two years and now I'm off again. Valcyte is the treatment that did the most towards reducing my symptoms and improving my quality of life. It was not a cure, but it was a big step towards normal function.

I always took it under the supervision of an experienced physician and had regular monitoring labs. It was a great medicine for me, but I understand it's not for everyone.

I've also taken Valtrex long-term to my benefit, although I'm off it at the moment also.

I'm too tired tonight to go into details. Maybe tomorrow. I'll be happy to answer questions.

I hope other people will share their Valcyte, Valtrex, and Famvir experiences here too -- good or bad. If anyone has experience with any other antivirals, that would be interesting as well.

I'd like to see this thread continue as an on-going resource for patients who are wondering about or considering taking these medicines. It would be helpful to have everybody's experiences in one place so new patients don't have to dig through a bunch of unrelated threada for information on antivirals.

Please let's keep this informational, not confrontational. This should be about the experiences of people who have taken these medications and questions from those interested in them. It shouldn't be a place where patients have to defend their treatment choices from those who think they know better than the patient. If you haven't taken them, this is not the place for you to criticise them. Please take that discussion to another thread where people who care can join you in a lively confrontational discussion on the merits (or not) of antivirals from the point of view of those who have never taken them.

I tried Valtrex but probably in too low a dose to do much good. I realized after looking at Corinne's medications that Dr. Peterson prescribes a much (much) lower dose than Dr. Lerner did - who wanted people to take it around the clock.

I've never tried Valcyte but I know of two people who did not do well on Valtrex who had astounding successes on Valcyte. One was in horrible shape - really horrible shape - before taking it. Now he's off hiking the hills and traveling. If he goes off it though he relapses.

 

[IrisRV]

I tried Valtrex but probably in too low a dose to do much good. I realized after looking at Corinne's medications that Dr. Peterson prescribes a much (much) lower dose than Dr. Lerner did - who wanted people to take it around the clock.

I've never tried Valcyte but I know of two people who did not do well on Valtrex who had astounding successes on Valcyte. One was in horrible shape - really horrible shape - before taking it. Now he's off hiking the hills and traveling. If he goes off it though he relapses.

I was a patient of Dr Lerner early on. He taught me most of what I know about AVs, although what I know is from a layperson/patient perspective.

One thing I learned was that antiherpetics (Valcyte, Valtrex, Famvir, acylovir) are not entirely interchangeable. Some work better on some herpesviruses, while others are more effective for different herpesviruses. While they all have some effect on all herpesviruses, often a person needs the most effective one to get the infection down sufficiently. Then a different AV might be sufficient to keep the virus suppressed long term.

Valcyte is the most effective for CMV and HHV6, the beta-herpesviruses. Valtrex is good for the alpha- and gamma-herpesviruses (HSV, chicken pox, EBV). Famvir seems to be more effective than Valtrex for CMV and HHV6, but not as effective as Valcyte. Since they are all effective to some extent, if you can't tolerate (or afford) the most effective one for your virus, you might still get some help from one of the others.

Lerner has, in some cases, used fairly high doses of antivirals, but he monitored very carefully for side effects -- labs every 4 weeks. If you didn't get the labs, he wouldn't give you a new script for the med. If your labs show things heading in the wrong direction, he'd immediately reduce the dose, change the AV, or take you off AVs altogether. In all the decades he treated ME patients with AVs, he never had a single case of one of the rare, but potentially dangerous side effects of the AVs -- neutropenia, liver damage, etc. He believed that was because he watched so carefully and changed course as soon as the labs showed the slightest sign of those side effects. I remember him frequently cautioning me, "Those side effects are completely reversible, if you catch them in time. So you must always do your labs on time."

IIRC, he said many people have chronic or recurring herpesviruses because the virus has moved into tissues that are not easy to get to with meds. Higher doses raise the blood level of the med so more (even though it's only a fraction of what's in the blood) gets into the tissues. Once you get the tissue levels down, lower doses or a less effective AV might be sufficient to keep the virus suppressed.

I am in a similar boat to your friend, @Cort, in that I relapse if I stay off Valcyte too long. I had a big improvement on Valcyte, but I'm nowhere near hiking in the hills yet. Other family members (who were never as sick as I was) became fully functional with Valcyte and in some cases, other symptomatic treatments.

 

[Prashanti]

I just completed tests done at Stanford (after a long time on the waiting list). I have been taking LDN for about 3 months which was awesome on all levels at first. Now it basically keeps alot of pain and stiffness at bay, but doesn't do much for my low energy.
IRIS, I so appreciate your information on types of anitvirals for different viruses. I have EBV and low level HSV 1. So I am about to start taking Valtrex 500mg twice a day....starting out with once a day for 2 weeks. This sounds like the correct drug to try. You mentioned high and low doses. Is this a high or low dose? Any thoughts from any of you on this?
I'm so grateful I've found this site. Thanks so much, Cort.

 

[IrisRV]

o I am about to start taking Valtrex 500mg twice a day....starting out with once a day for 2 weeks. This sounds like the correct drug to try. You mentioned high and low doses. Is this a high or low dose?

That's a bit hard to answer. What's high under one circumstance, is considered low in another. Your body mass can also affect what is a high dose for you. The right dose for a very small person might be too little for a much bigger person.

I would be very confident that Stanford is giving you the right dose for your situation. They know their stuff there.

I know people who were prescribed twice, or even three times that dose for a period of time (under the care of a very experienced infectious disease doctor), but I don't think that is typical. Based on what I've heard, the dose you are taking is more in the moderate category -- in the middle, not really low and not really high.

 

[Who Me?]

The problem I come up against with AV's was being able to tolerate it. I had no problems with acyclovir and it helped subtly with energy.

Valtrex, within one week I was ready to go on a murderous rampage. After I ripped apart 3 people one after the other at my bank, it dawned on me something was wrong. I stopped the Valtrex and immediately the anger was gone.

Famvir I'm good with 1000/mgs per day and it has pulled me out of 2 viral reactivations

Valcyte I can comfortably take 450 mgs. If I go up even 125 then I have horrible cramping and bloat. Not constipation or gas, I can't explain but painful. I toughed it out for a week but add that to my IBS-C, it was more than I could tolerate.

The other thing was the doc who was monitoring me really didn't care. Even though my CMV IgM was positive, because i was negative by PCR he was uninterested. After a 10 month trial, with no noticeable difference I stopped.

But I would absolutely try again if 450 mgs would do anything.

 

[kamodio]

I was on Valcyte two years, off two years, back on about two years and now I'm off again. Valcyte is the treatment that did the most towards reducing my symptoms and improving my quality of life. It was not a cure, but it was a big step towards normal function.

I always took it under the supervision of an experienced physician and had regular monitoring labs. It was a great medicine for me, but I understand it's not for everyone.

I've also taken Valtrex long-term to my benefit, although I'm off it at the moment also.

I'm too tired tonight to go into details. Maybe tomorrow. I'll be happy to answer questions.

I hope other people will share their Valcyte, Valtrex, and Famvir experiences here too -- good or bad. If anyone has experience with any other antivirals, that would be interesting as well.

I'd like to see this thread continue as an on-going resource for patients who are wondering about or considering taking these medicines. It would be helpful to have everybody's experiences in one place so new patients don't have to dig through a bunch of unrelated threada for information on antivirals.

Please let's keep this informational, not confrontational. This should be about the experiences of people who have taken these medications and questions from those interested in them. It shouldn't be a place where patients have to defend their treatment choices from those who think they know better than the patient. If you haven't taken them, this is not the place for you to criticise them. Please take that discussion to another thread where people who care can join you in a lively confrontational discussion on the merits (or not) of antivirals from the point of view of those who have never taken them.

Thank you for your post. I expect I'll be starting on Valcyte for HHV6 in June after a 2-3 month course of antibiotics for c.pn. I will be happy to share and am certainly interested in the experiences of others who've gone this route.
We each have our personal histories that make up our unique disease picture and require personalised treatments. May each one who is searching for healing find their way to health. I hope that by sharing our stories others may recognise something of their own and find hope, inspiration, and new possibilities.

 

[IrisRV]

I will be happy to share and am certainly interested in the experiences of others who've gone this route.

Please do. There is a lot of variety in the responses and reactions to, tolerance for, and dosing of Valcyte. I suspect this has a lot to do with the fact that there are a lot of subsets (maybe even different diseases entirely) currently under the heading ME/CFS. Even though each patient may have an active CMV or HHv6 infection, other factors of our condition might significantly alter our response to it.

So, the more stories we have with details of symptoms, testing, response, dosing and everything else, the easier it will be for other patients to consider The pros and cons of Valcyte for them.

 

[fdotx]

Iris thanks for starting this thread re viruses, antivirals, etc.

I went to Stanford in September and labs showed high Early Antigen EBV but am confused because the Ab VCA IgM was normal and one article said that it shows an active infection and the Early Antigen shows a reactivated old infection but not an active infection, which made no sense to me, but another article acted as if Early Antigen showed an active infection. My HHV6 IGG antibodies were also very high but I read that 30% of people have this virus latent in their blood, so do these really mean anything?

I've been on acyclovir for a month with sore lymph nodes and feeling worse and that's not even full dose yet. Would you suggest I go to Famvir?

The PA made no mention of monthly lab draws - should I ask about this?

I had thought EBV had been debunked as a cause of CFIDS but see it's been making a comeback as well as HHV6. If some folks think this is a cause of some CFIDS then it seems to me those people don't think CFIDS is a separate disease looking for a biomarker?

 

[Who Me?]

@fdotx Please go back and add paragraph breaks every 2 or 3 sentences. I cannot read that much text in huge chunks @Cort. can you help?

 

[Who Me?]

@fdotx you can go back and edit your post any time. Add paragraphs, simplify if you want.

I always go back and fix spelling and to make sure I made sense.

Thanks

 

[fdotx]

Done. Thanks "Who Me?" I hadn't noticed those prompts at the bottom....

 

[fdotx]

Firstly i think for most, herpes viruses are not the cause but for a sub group they can severly aggravate cfsme. It appears to be like a coinfection to some underlying cause of immune dysfunction . So we dont really know what the cause is but treating coinfection like herpes viruses can improve ones function and help take stress of the immune system.

i have been on antivirals since 2009. Cfs onset 2002 cmv, ebv mono and vzv. Most of my time on famvir and after my first 12 months i thought i was very close to recovered. I then changed to valtrex as it was cheaper at the time. On valtrex i relapsed. I went back on famvir and started improving once again but i couldnt get myself back to where i was before my relapse.

I can't remember the exact time line but i did go on valcyte for 18months and this helped me move up another 2 points on a 10 point scale up to an 8. I have always had tests bounce around between mild neutropenia to low normal. After a long time on valcyte my neutrophils dropped to moderate neutropenia and i was get more constant sinus infections. My improvement on valcyte stopped after 6 months so hind sight i should have switched over to famvir.

i have remained on famvir and it has kept me function and able to work. I have stopped famvir several times but would only last 2 to 4 weeks before viral symptoms would start up and i would go back on famvir where symptoms would reduce.

last year i stopped famvir again and within a few days had a shingles outbreak on my head. As soon as the rash occurred i went back on avs. I have continued to have viral/shingles outbreaks throughout the year but in a mild form. Several weeks ago i decided to try vvalcyte again. Within a few days off famvir, another harsh shingles outbreak , i stopped valcyte and added famvir back in. So the last 4 weeks i have had constant headaches and fatigue etc.

I believe without famvir i would be much worse but i think my experience shows theres some other underlying cause creating an immune dysfunction, which can allow viruses like vzv to reactivate.

I have had regular blood work done and liver/kidney function have been fine. I do believe nac supplements have helped keep my liver healthy.

antivirals arent a treatment for cfsme but are used for herpes viruses that reactivate in cfsme patients. They are used just like they would be for anyone else with an immune disorder.

I think your immune dysfunction makes sense Strike Me Lucky and that's why I'm surprised Stanford didn't order any immune tests. Said it wouldn't affect treatment anyway but I'd think that if these viruses are a problem then why not explore to see if an ailing immune system might be what is causing them to stick around? I would think building it up and getting to the root cause would be better than anti virals. At any rate being a well known research center I'd think they'd at least be curious?

 

[IrisRV]

Edit:
I answered @fdotx here, but my post was overlong and detailed and contained too many quotations making it upsetting for some members.

@Who Me? answered much, much more succinctly. Therefore, I have removed my post so it wouldn't bother people with visual issues.

 

[Who Me?]

Here is what I think it is, dumbed down, since I can't read anything @IrisRV. Too long, too many quotes for my brain.

Most docs say everyone has been exposed to these viruses so not a big deal that you show IgG. Some don't even care if you are IgM. They don't take that into account when looking at the total health of the patient.

But docs who treat ME/CFS feel that even positive IgG is significant for us and why many use antivirals. They say, well yes people were exposed but have those other people been sick for 20 years?

 

[IrisRV]

since I can't read anything @IrisRV. Too long, too many quotes for my brain.

Sorry, @Who Me? I'm working on it, but apparently it's going to take a while.

At least I'm not alone

[Multiple literary quotations deleted.]

 

[Who Me?]

thanks for screwing with my brain even more.