General Survey re: Anti-virals

[heapsreal]

Clearsky online pharmacy sell generic valcyte for $8 per pill.

 

[Hip]

@Hip Is Nexavir available in the US and why did you stop after four mos if it was helping?

That's a good question. To start with, I find with ME/CFS, it can be difficult to gauge changes in the severity of your condition from week to week, or month to month, mainly because of the brain fog and memory problems — we often cannot remember what we had for lunch yesterday, let alone how we felt last month! So if you are getting a slow, gradual improvement over the months from a drug or supplement, it is often not that easy to notice it.

I had a general impression that Nexavir was helping me during the four months that I took it (this was 2 years ago), but I was not sure, so I stopped taking it. Nexavir is quite expensive, so money also weighed into this decision. But about 6 months after stopping Nexavir, looking back, I realized that my ME/CFS had got a lot better. I was able to notice this because before starting Nexavir, I was often so tired that I would have to stay in bed all day and night for one or two days each week, due to severe fatigue; and on most other days I would need to take long two or three hour naps in the afternoon.

But about 6 months after I had completed my course of Nexavir, I realized that I would no longer need to spend whole days in bed due to sheer fatigue, and I would no longer need to take naps in the afternoon.

So certainly a big improvement in my fatigue levels; and my brain fog was also improved. However, around the same time that I began my course of Nexavir, I also I started taking a few new supplements that I know had good effects on my health (these supplements that improved my health are: N-acetyl-glucosamine, selenium, and possibly horsetail herb / silica; I am still taking these each day; note that selenium has antiviral properties).

So unfortunately, I don't know for sure how much Nexavir was responsible for my upturn in health, and how much these three supplements caused —and are still maintaining — my improved health.

I guess the only way to know would be for me to take another course of Nexavir, and see if Nexavir might provide me with some further gains in health. I am considering doing this. Nexavir though is unfortunately not available under the UK NHS, so I would need to pay for it myself.

 

[Gingergrrl]

There was no comparison for me between the relative potencies of Nexavir and Valcyte. Nexavir did help some but nothing like Valcyte.

I've taken Famvir, Valtrex and Valcyte. I also did IV cidofovir for 9 months.

I have high titers to EBV, hhv6 and CMV.

I didn't really have any side effects but I'm perplexed as to why I've regressed over the past 9 months. I was doing much better last summer and now I'm back to mainly bedbound. Of course, I also had an interruption in my Hizentra treatment which didn't help. And don't get me started on my adrenals. I think CMV is trying to kill them!

@Ema Of all the av's that you tried is there one that you would say in hind sight was the most helpful? Also, do you still take an AV now or are you done with them?

I googled Hizentra after you mentioned it b/c I had not heard of it before. Why were you doing that treatment (as an antiviral or something else?) and how did it help?

 

[Hip]

There was no comparison for me between the relative potencies of Nexavir and Valcyte. Nexavir did help some but nothing like Valcyte.

I've taken Famvir, Valtrex and Valcyte. I also did IV cidofovir for 9 months.

I have high titers to EBV, hhv6 and CMV.

That is very interesting to hear, @Ema. Though I guess in this comparison of Nexavir and Valcyte, a lot might depend on how much cytomegalovirus is the cause of your symptoms, since Nexavir has no effect against cytomegalovirus, but Valcyte does.

How did Famvir / Valtrex compare to Nexavir, by the way?

I didn't really have any side effects but I'm perplexed as to why I've regressed over the past 9 months. I was doing much better last summer and now I'm back to mainly bedbound. Of course, I also had an interruption in my Hizentra treatment which didn't help. And don't get me started on my adrenals. I think CMV is trying to kill them!

It's seems that it is not uncommon to regress around 1 year after stopping Valcyte, from the stories I have read on this forum. It really is a shame that the gains made on Valcyte, which is not cheap, do not maintain themselves.

 

[Gingergrrl]

@heapsreal I know we've talked about this before but it sounds like you had really significant benefit from Famvir and if you had to do it over, you would choose Famvir?

Also can you remind me if you only had EBV or multiple viruses?

Also does Valcyte always cost $8 per pill?!!'

 

[SOC]

@SOC- interesting that you noted your migraines improved with the AVs. I had noticed my migraines had totally disappeared while I was on Famvir. After stopping it, they rapidly reappeared at about the same frequency as before. While I was discouraged that the result didn't last after stopping the med, it was such a direct correlation it has to have been related. I'm back on the Famvir and the HAs are resolving again. While I don't want to be on Famvir for the rest of my life, it is really nice to have something that relieves those blasted headaches.

It was my daughter who had migraines, poor thing. I was fortunate to avoid them. We suspect that what we called her migraines where the result of neuroinflammation from the HHV6, but of course we have no solid evidence for that.

 

[Ema]

@Ema Of all the av's that you tried is there one that you would say in hind sight was the most helpful? Also, do you still take an AV now or are you done with them?

I googled Hizentra after you mentioned it b/c I had not heard of it before. Why were you doing that treatment (as an antiviral or something else?) and how did it help?

I should mention that I also have Lyme as another complicating factor.

I started Hizentra because I was low in IgG levels, and really low in subclass 3 which helps to fight viral infections. It can also help with autoimmune disease just in case that turns out to be a factor in ME/CFS. I was able to come off the steroids I had taken for almost 3 years for adrenal insufficiency as well as thyroid hormone.

Then I started Valtrex and cidofovir and continued to improve. Things were the best they had been for years until last August when I fell twice and really did a number on my ankle, got a brand new puppy and started Cycloset (which dropped my NE levels, never apparently to recover). That all put me on a downward trajectory that has continued unfortunately to the present day.

I started Valcyte last fall and that made an immediate improvement in my OI symptoms. Cidofovir lowered my hhv6 titers but I'm not sure if it made me feel much better. I think the 2 L of saline I got every other week with it may have helped as much as the drug unfortunately.

I'm going to stay on the Valtrex and Valcyte for at least two years unless my body objects.

 

[SOC]

It's seems that it is not uncommon to regress around 1 year after stopping Valcyte, from the stories I have read on this forum. It really is a shame that the gains made on Valcyte, which is not cheap, do not maintain themselves.

I think it's pretty simple, but unfortunate. HHV6 and CMV establish latent infections just like EBV and VZV. If our immune systems don't have the ability to keep the viruses latent, which it appears they don't, then the viruses will eventually reactivate and replicate to the point where they are causing significant symptoms again. Then you have to do another round of antivirals until you knock them back into latency. Round and round you go. You can't eliminate the virus, all you can do is keep knocking it back periodically.

 

[Ema]

That is very interesting to hear, @Ema. Though I guess in this comparison of Nexavir and Valcyte, a lot might depend on how much cytomegalovirus is the cause of your symptoms, since Nexavir has no effect against cytomegalovirus, but Valcyte does.

How did Famvir / Valtrex compare to Nexavir, by the way?



It's seems that it is not uncommon to regress around 1 year after stopping Valcyte, from the stories I have read on this forum. It really is a shame that the gains made on Valcyte, which is not cheap, do not maintain themselves.

I am still on Valtrex and Valcyte so my regression is probably not due to stopping those unfortunately as that would be an (easier) fix.

I don't think I took Famvir at a high enough dose to do anything. And the Valtrex may hopefully be working on my EBV but it's hard to tell with everything else going on. The CMV and hhv6 seem to produce more symptoms for me...or at least more obvious ones.

I'm afraid my immune system is just trashed unfortunately. I'm in a pretty sad place right now.

 

[SOC]

Also does Valcyte always cost $8 per pill?!!

$8??? Try more like $50 per pill. If you have insurance to pay for part if it, the cost to you can be much less, of course. The good news is that it goes off patent (or whatever the pharmaceutical equivalent is) in 2015 and the cost should go down significantly as legal generics come on the market.

 

[heapsreal]

@heapsreal I know we've talked about this before but it sounds like you had really significant benefit from Famvir and if you had to do it over, you would choose Famvir?

Also can you remind me if you only had EBV or multiple viruses?

Also does Valcyte always cost $8 per pill?!!'

Definately choose famvir and im still using it. I relapsed when i went on valtrex, which maybe isnt a good fit for cmv.
Basically i have ebv/cmv/chickenpox. I think the chickenpox was the main initiating virus and i think probablt caused the neuropathy i get in my legs.

Valcyte generally costs alot more but there is generic valcyte made in india as they ignored US patent laws, i think their reason being is it was just too expensive for many in india with HIV.

I think the relapse when i changed from famvir to valtrex maybe allowed the viruses to get deeper maybe?? so only partially responded once i returned to famvir. valcyte is said to better penetrate the nervous system better then other antivirals, maybe this is why it is stronger. But now i have done the valcyte, famvir seems to be enough to keep me on track.

Theres been other that have used famvir with multiple types of responses. i think its worth a shot first up and may be all u need but keep valcyte on the back burner incase u reach a plateau with famvir? I think those of us who have issues with these viruses are going to need to stay on antivirals for many years. Valcyte though i think i would limit to 12 months and then change back to famvir. Also common to do famvir or valtrex with valcyte.

I would consider taking good liver protecting supplements like NAC, lipoic acid, milk thistle etc as av's can be harsh on the liver. SO regular testing of liver and kidney function is important.

Also full blood counts to keep an eye on white cell counts, neutrophils and lympghocytes etc especially for valcyte as it can suppress bone marrow which is where white blood cells are made from. This doesnt seem to be as big an issue with famvir or valtrex.

I had 1 blood test where my liver values were slightly outside the normals but i was also using other meds for back pain etc that didnt help, so i cut back on these and increased my nac and the next test liver values were fine. Valcyte did lower my neutrophil count, this can leave u open to bacterial infections. Dont have any ideas on how to prevent this but if they go too low then its time to stop valcyte and move onto another av.

 

[heapsreal]

$8??? Try more like $50 per pill. If you have insurance to pay for part if it, the cost to you can be much less, of course. The good news is that it goes off patent (or whatever the pharmaceutical equivalent is) in 2015 and the cost should go down significantly as legal generics come on the market.

Brand Name(s) :
Generic Valcyte (Valgan by Cipla)
Usage : HIV
Active Ingredient :
Valganciclovir 450mg
Supplied Form : Tablet
Packaging : Box with 4 tablets

QuantityPricePrice pr
TabletSaving

450mg x 20 pcs $199.95 $10.00-
450mg x 40 pcs $369.95 $9.25
450mg x 60 pcs$ 489.95 $8.17

https://www.clearskypharmacy.cc/generic-valcyte-valgan-by-cipla.html

 

[barbc56]

That's a good question. To start with, I find with ME/CFS, it can be difficult to gauge changes in the severity of your condition from week to week, or month to month, mainly because of the brain fog and memory problems — we often cannot remember what we had for lunch yesterday, let alone how we felt last month! So if you are getting a slow, gradual improvement over the months from a drug or supplement, it is often not that easy to notice it.

Great point. This also applies to those who are healthy (probably not as much?) and why studies that use self reporting may not be as objective.

Sorry , don't want to get off topic but it's an important point that most of us already know but bears repeating.

I don't think I ate lunch yesterday but I wouldn't bet money on it!

Barb

 

[Gingergrrl]

Then I started Valtrex and cidofovir and continued to improve. Things were the best they had been for years until last August when I fell twice and really did a number on my ankle, got a brand new puppy and started Cycloset (which dropped my NE levels, never apparently to recover). That all put me on a downward trajectory that has continued unfortunately to the present day.

I started Valcyte last fall and that made an immediate improvement in my OI symptoms. Cidofovir lowered my hhv6 titers but I'm not sure if it made me feel much better. I think the 2 L of saline I got every other week with it may have helped as much as the drug unfortunately.

I'm going to stay on the Valtrex and Valcyte for at least two years unless my body objects.

@Ema I'm sorry to hear about all the stuff you have going on and falling and hurting your ankle. Is it better now? Is Cidofovir an anti-viral comparable to Valtrex/famvir, etc? It sounds like it is delivered by IV? Was there a reason you stopped that one?

You mentioned planning to stay on Valtrex/Valcyte for two years and I was wondering, do most CFS specialists say that there is a time limit or can patients choose to stay on them for as long as they want/need?

 

[Gingergrrl]

Definately choose famvir and im still using it. I relapsed when i went on valtrex, which maybe isnt a good fit for cmv.
Basically i have ebv/cmv/chickenpox. I think the chickenpox was the main initiating virus and i think probablt caused the neuropathy i get in my legs.

Valcyte generally costs alot more but there is generic valcyte made in india as they ignored US patent laws, i think their reason being is it was just too expensive for many in india with HIV.

I think the relapse when i changed from famvir to valtrex maybe allowed the viruses to get deeper maybe?? so only partially responded once i returned to famvir. valcyte is said to better penetrate the nervous system better then other antivirals, maybe this is why it is stronger. But now i have done the valcyte, famvir seems to be enough to keep me on track.

Theres been other that have used famvir with multiple types of responses. i think its worth a shot first up and may be all u need but keep valcyte on the back burner incase u reach a plateau with famvir? I think those of us who have issues with these viruses are going to need to stay on antivirals for many years. Valcyte though i think i would limit to 12 months and then change back to famvir. Also common to do famvir or valtrex with valcyte.

I would consider taking good liver protecting supplements like NAC, lipoic acid, milk thistle etc as av's can be harsh on the liver. SO regular testing of liver and kidney function is important.

Also full blood counts to keep an eye on white cell counts, neutrophils and lympghocytes etc especially for valcyte as it can suppress bone marrow which is where white blood cells are made from. This doesnt seem to be as big an issue with famvir or valtrex.

I had 1 blood test where my liver values were slightly outside the normals but i was also using other meds for back pain etc that didnt help, so i cut back on these and increased my nac and the next test liver values were fine. Valcyte did lower my neutrophil count, this can leave u open to bacterial infections. Dont have any ideas on how to prevent this but if they go too low then its time to stop valcyte and move onto another av.

@SOC and @heapsreal Wow, I did not realize that Valcyte cost $50 per pill? Will insurance cover much since it would be prescribed "off label?" I think this pretty much rules it out for me (although it was not my first choice anyway.)

Also, Heapsreal, did you have chickenpox as an adult or did the virus re-activate from childhood like some of the other viruses? And do recommend the liver supplements with Famvir or only with Valcyte?

 

[Sushi]

@Gingergrrl43

BTW, I don't have CMV and have never tested positive for HHV-6--though that doesn't mean I don't have it. This is one reason I haven't been on oral anti-virals.

Sushi

 

[heapsreal]

@Gingergrrl43 i had chickenpox as a kid. When 31yo had cmv mono and while still in a post viral state from cmv i got chickenpox a second time and ebv shortly after. Suppose to only get chickenpox once but since i have had it i have come across other who have also had it more then once. Im going to get chickenpox antibodies tested soon actually just out of interest as for some reason dont make alot of antibodies for certain things i have been vaccinated for etc.
I also lost my life long igg antibodies to ebv, know one can really tell me much about that but i did read it was common amongst the lake tahoe outbreak??

 

[heapsreal]

@Gingergrrl43

BTW, I don't have CMV and have never tested positive for HHV-6--though that doesn't mean I don't have it. This is one reason I haven't been on oral anti-virals.

Sushi

interesting thing is 95% plus of adults are suppose to have had ebv/cmv/hhv6, so i wonder if someone with cfs/me with crappy immunity doesnt test positive to these viruses, maybe they arent producing antibodies or maybe viruses are no longer in the blood but sitting in the nervous system or immune system???

 

[WillowJ]

I used Famvir at the low dose for, idk, a little longer than 6 months. It came to me that my brain fog was worse since beginning, and my doc said this was possible from the med, so we stopped it as a trial. Did improve within weeks, so we called it due to the medicine.

I thought I might be improving physical function the first little bit, not after, so probably not related to the medicine.

But if I couldn't tolerate a low dose of Famvir, I didn't want to try any other AVs. (my doc didn't suggest this, either)

I also couldn't tolerate anything that was given to boost the immune system. Too much reaction; it might have been an IRIS-like reaction but too ill to manage that. I would take myself off and tell my doc, oh by the way I quit your [expensive] supplement; I couldn't manage the reaction.

 

[Sushi]

interesting thing is 95% plus of adults are suppose to have had ebv/cmv/hhv6, so i wonder if someone with cfs/me with crappy immunity doesnt test positive to these viruses, maybe they arent producing antibodies or maybe viruses are no longer in the blood but sitting in the nervous system or immune system???

Yes, good chance that I have HHV-6 and am not producing antibodies but I was in an experimental vaccination program for CMV many years ago, and it was supposed to have been a success.

Sushi