Valcyte uses 2nd,3rd or 4th courses?

heapsreal

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I'm interested to know if other who have done the traditional 6 months on valcyte, how long before another relapse and the start of 2nd course or more, did you find Improvements much quicker compared to your initial course.

I have a theory that it takes longer to get to the stage where one starts their first valcyte treatment, maybe 5yrs maybe 9yrs. This time frame has greatly increased the viral load. The second time around people jump back on valcyte sooner, so viral load not as high and possibly why valcyte appears to work quicker the next time round.

Cheers
 

heapsreal

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I initially did 18 month on valcyte mostly at 450mg once per day along with 500mg famvir twice a day and continued improving on famvir.

Start of 2020 was the decline, extra headaches, fatigue etc. I didn't have enough money to run a full 6 month course but I had a months worth on hand and another month supply I've ordered to keep up my sleeve.

First 3 weeks I took 450mg valcyte once per day with twice daily famvir. The 4th week 450mg valcyte twice per day with famvir. First 3 or 4 days I felt crap and considering an exit strategy but then I started feeling better. Gradually less headaches and fatigue mostly. From memory, my first valcyte course of 18months, I think I got all the improvements in the first 3 months. The rest of the time I was too paranoid to stop.

So I recently completed 4 weeks of valcyte and generally feel better and more of an urge to get things done. Days off start for me so we will see how that goes.

I'm hoping famvir is enough to maintain things. If not I will use the months supply I have, and order another months worth.

Also prior to starting valcyte my lymphocyte markers cd3, cd4, cd8 t cells and up as high as they were several years back when I was up shit Creek in a barbed wire canoe. Hopefully I have viral load low enough that it takes time to build up.

Time will tell how long I can sustain this improvement or improve some more now off famvir🤔

Again I don't recommend this unless one has relapsed from a 6 month course and need something to get back on track.

Cheers🍺
 

jstefl

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I took Valcyte for 10 months back in 2008 and have not had a relapse since. When I started my blood pressure was 80/50 with a pulse of 50. As you might guess, I was barely able to stand without passing out. As I took the Valcyte I was able to wean myself off of the blood pressure increaser that I was taking, and now have very normal BP. I was also suffering from extremely debilitating headaches which greatly decreased in intensity in the first two weeks of Valcyte. In addition, I noticed a number of other improvements.

So far, all of the improvements have stayed with me, there has not been any regression or any desire to start Valcyte again. 2008 was the early days for Valcyte treatment of ME/CFS, and I wish that I could have convinced my doctor to keep up with the treatment, but there wasn't much evidence to go on at that time, and Valcyte was extremely expensive then.
 

heapsreal

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I took Valcyte for 10 months back in 2008 and have not had a relapse since. When I started my blood pressure was 80/50 with a pulse of 50. As you might guess, I was barely able to stand without passing out. As I took the Valcyte I was able to wean myself off of the blood pressure increaser that I was taking, and now have very normal BP. I was also suffering from extremely debilitating headaches which greatly decreased in intensity in the first two weeks of Valcyte. In addition, I noticed a number of other improvements.

So far, all of the improvements have stayed with me, there has not been any regression or any desire to start Valcyte again. 2008 was the early days for Valcyte treatment of ME/CFS, and I wish that I could have convinced my doctor to keep up with the treatment, but there wasn't much evidence to go on at that time, and Valcyte was extremely expensive then.
Thanks for sharing. It's good to get peoples experiences and see that it helped you with a significant symptom like low BP that you can see measurable results. Great that improvements have stayed with you👍

I will add to this post something significant I noticed today. I usually have high blood pressure and severe headaches spike it higher again, 180/110 was not uncommon but generally around 150s/95. I'm on meds for high BP.

My headaches have improved alot and today I took my blood pressure, 130/80. It hasn't been like that in years. My guess is that valcyte reduced my viral load to cmv and probably vzv and this has reduced neuroinflammation, which then brought my BP down and helped headaches.

Today I did several hrs of hard work around the yard, mowing and chopped trees and shrubs Down that filled 2 trailers worth. I'm feeling tired now but probably like a normal person would after doing all that. We will see how I go tomorrow.

I wish in Australia we had access to proper viral titre testing than I could see the viral load increasing and do something about it. Instead I'm trying many other things as hesitant to use valcyte because of cost, side effects etc and not sure if valcyte is the answer. Although my T cell subsets were up similar to previous times prior to first using valcyte. While I'm wishing, I hope famvir can help sustain this improvement as it has in the past.
 

heapsreal

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Short version, I don't think 4 weeks is long enough if one has used it previously.
3 days after stopping, the headaches increased as well as lethargy. My BP also went up to pre valcyte range.

So I'm back on valcyte and will continue for atleast 2 more months. I've been back on for 5 days and already feel abit better for it. So I'm still taking famvir 500mg twice a day and valcyte 450mg once a day.

I'd really like to be on immunovir or cycloferon after a course of valcyte, too improve immune function and maintain results. But they are either too expensive for my budget, especially after buying generic valcyte, or unable to get a reliable source as it seems most of the previous places I've ordered from were sourced out of Russia or Ukraine.

For me there's definitely something to the herpes viruses and my cfsme but maintaining improvement is hard. If supplies/shipping of Famvir to Australia weren't buggered up by transport issues and covid at the beginning of 2020, which is why I had significant time off famvir, I wonder if I'd have regressed?? I'm 90% sure it is why but it is what it is.
 

Marylib

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I know someone who has been on antivirals for maybe 10 years -not sure which ones - but she used to see Dr Montoya at Stanford in California. I guess she sees his replacement now. They give her a life. She was bedbound before. Every now and then she goes off them and gets back in bed to give her organs a break. Hope you can keep getting what you need @heapsreal.
 

heapsreal

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I know someone who has been on antivirals for maybe 10 years -not sure which ones - but she used to see Dr Montoya at Stanford in California. I guess she sees his replacement now. They give her a life. She was bedbound before. Every now and then she goes off them and gets back in bed to give her organs a break. Hope you can keep getting what you need @heapsreal.
Thanks.
I've been on antivirals since 2009, mostly famvir. Can help give is a slightly better base line of function. Before the supply issue I was hitting the gym up 2-3 days a week. I have to remember antivirals take time to get things sorted.

Cheers.
 

godlovesatrier

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Yes very true they do appear to. I think if you've got the viruses supressed and the bacterial opportunistic infections supressed throughout the day you stand a good chance of then recovering to a better baseline. But it feels like the immune system goes to various parts of the body first - possibly the most acutely infected. (In my own experience low doses of any of the antivirals don't really achieve that 24 hour smothering of the viral loads, but each persons need is slightly different).

On my 16 day famvir trial I got a full case of tonsillitis for 4 days and after that swelling and pain + ebv type symptoms disappeared from my throat. Sore throat however didn't really disappear fully until I took valtrex for 2 days, assume lytic replication was high. But Dr Lerner's abortive infection theory while it might be right for some patients may not be a requirement for others.

In that case if we are the other patients, suppressing the two pathological loads (assuming no co-infections) with supplements for other pathways might be enough to get you to say 80% - which is what it sounds like heaps was at before.

This is assuming detox pathways are working properly however and other issues haven't crept in, not to mention as I recently found out potentially horrible and dangerous side effects from the drugs. But famvir seems incredibly safe and two people at least on PR showed it suppressed hhv-6 and cmv (with pathology reports), although not potently would be my guess. However sometimes lowering these titers does not return us to full health anyway as a small number have reported on PR (again with pathology reports).

and as we've discussed valcyte has immunomodulatory and anti inflammatory effects on the brain, so that could be it's secondary mode of action to get more ME patients into remission than those who didn't get on with the drug. I think for me lipo glutathione has ultimately got my brain functioning very well, but it's not the only factor effecting brain fog/slow function.

But it's a difficult one, seems like for every one patient who did well there's an equal number who didn't.

Good luck to us both heaps :) I am really hoping side effects of the new famvir will be more tolerable.
 
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heapsreal

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Yes very true they do appear to. I think if you've got the viruses supressed and the bacterial opportunistic infections supressed throughout the day you stand a good chance of then recovering to a better baseline. But it feels like the immune system goes to various parts of the body first - possibly the most acutely infected.

On my 16 day famvir trial I got a full case of tonsillitis for 4 days and after that swelling and pain + ebv type symptoms disappeared from my throat. Sore throat however didn't really disappear fully until I took valtrex for 2 days, assume lytic replication was high. But Dr Lerner's abortive infection theory while it might be right for some patients may not be a requirement for others.

In that case if we are the other patients, surpressing the two pathological loads (assuming no co-infections) with supplements for other pathways might be enough to get you to say 80% - which is what it sounds like heaps was at before.

THis is assuming detox pathways are working properly however and other issues haven't crept in, not to mention as I recently found out potentially horrible and dangerous side effects from the drugs. But famvir seems incredibly safe and two people at least on PR showed it supressed hhv-6 and cmv, although not potently I would guess. However sometimes lowering these titers does not return us to full health.

and as we've discussed valcyte has immunomodulatory and anti inflamatory effects on the brain, so that could be it's secondary mode of action to get more ME patients into remission than those who didn't get on with the drug.

But it's a difficult one, seems like for every one patient who did well there's an equal number who didn't.

Good luck to us both heaps :) I am really hoping side effects of the new famvir will be more tolerable.
Spot on👍
 

Learner1

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@heapsreal Given what you've said, I suspect you weren't on a high enough dose of valganciclovir for long enough. I was originally put on it for a combination of EBV, HHV6, CMV, and HSV2, at 2 450mg pills twice daily for 12 months, then 8 months of 1 pill twice daily. My doctor kept me on it until I had four successive negative EBV PCR tests.

Fast forward 2 years and after my 2 pandemic shots last year, my HHV6 reactivated, and HSV2 kept flaring. I went back on 2 x 450mg pills twice daily, but this time, it wasn't enough - I still had a positive PCR for HHV6. My doctor added 1mg famciclovir 3x daily, and I stayed there for 3 months, then backed off the famciclovir, and stayed on the valganciclovir at 1 pill twice daily. However, HSV2 kept trying to emerge, do I'm back on 2 450mg pills twice daily and am doing well.

I wish the drug was more readily available and not so expensive as many more patients can benefit.
 

hapl808

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I wish the drug was more readily available and not so expensive as many more patients can benefit.
I wish both the drug and doctors who understood these things were more available. I've seen multiple ID specialists, immunologists, ME/CFS specialists, and none of them has suggested any of those tests. I got some viral sequencing tests on my own, but they came up with nothing and I think they mishandled the specimen.

Unfortunately, I also find that my situation is precarious enough that any blood work crashes me, sometimes dropping me on the scale for years. That's been frustrating as at this point I'd rather function as housebound than chase some nebulous treatment and quickly end up bedbound again.
 

Tammy

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Unfortunately, I also find that my situation is precarious enough that any blood work crashes me, sometimes dropping me on the scale for years.
If you think about it, that could be because that's where a big part of our immune system lies............in our blood stream. WBC's and RBC's are taken away every time they draw blood. I'm not saying that one should never get blood taken again, but I try not to get it taken that often. I feel washed out afterward. A friend of mines boyfriend draws blood at the lab and he said it's really not necessary to take the amount of blood that they are taught to take.
 
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heapsreal

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@heapsreal Given what you've said, I suspect you weren't on a high enough dose of valganciclovir for long enough. I was originally put on it for a combination of EBV, HHV6, CMV, and HSV2, at 2 450mg pills twice daily for 12 months, then 8 months of 1 pill twice daily. My doctor kept me on it until I had four successive negative EBV PCR tests.

Fast forward 2 years and after my 2 pandemic shots last year, my HHV6 reactivated, and HSV2 kept flaring. I went back on 2 x 450mg pills twice daily, but this time, it wasn't enough - I still had a positive PCR for HHV6. My doctor added 1mg famciclovir 3x daily, and I stayed there for 3 months, then backed off the famciclovir, and stayed on the valganciclovir at 1 pill twice daily. However, HSV2 kept trying to emerge, do I'm back on 2 450mg pills twice daily and am doing well.

I wish the drug was more readily available and not so expensive as many more patients can benefit.
My initial treatment with valcyte was 18months along with famvir. I started with 1valcyte a day and that was a challenge to tolerate. I did move to 1 tab twice a day and eventually 1 tab once a day. I can't recall the exact time length for each dosage but a total of 18months.

Yes it's horribly expensive and even with generics. Alldaychemist is the best price I found.
 

godlovesatrier

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Also I appreciate my experience isn't everyone but those indian generics are grim, the side effects are horrendous for me. I'd guess valcyte wouldn't be much different. Saying that some people tolerate them fine :)

Interesting you took it with the famvir, I must have forgotten that. Bet it was hard going tolerating that while working.
 

heapsreal

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Also I appreciate my experience isn't everyone but those indian generics are grim, the side effects are horrendous for me. I'd guess valcyte wouldn't be much different. Saying that some people tolerate them fine :)

Interesting you took it with the famvir, I must have forgotten that. Bet it was hard going tolerating that while working.
Yes those first few weeks were bloody hard, another layer of crap on too of the cfs but with time it went away and cfs Improved.
 

heapsreal

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A quick update. Just into my 3rd month of valcyte. It's helping cfs symptoms ie less fatigue and been doing some mild exercise, headaches less severe and less regular.

It maybe getting old or deconditioning etc but dealing with injuries popping up which I'm not overly sure how I got. Had a calf strain for a couple of weeks and it settled down and decided to piss me off by going after my knee. Maybe the exercise/wt training, but it's well within my limits, basically like rehab stuff at the moment. Also when my activity goes to crap my lower back gets worse , so some exercise helps there but limited by this calf and knee crap. Otherwise I think I could almost say I could do wt training that doesn't look like geriatric rehab.

So 3 months on valcyte will be my limit for now due to cost, as well as avoid potential side effects from long term use. Hopefully can maintain the cfs improvements and save a little kitty to pay for more valcyte if needed.

Cheers