heapsreal
iherb 10% discount code OPA989,
- Messages
- 10,214
- Location
- australia (brisbane)
Clearsky online pharmacy sell generic valcyte for $8 per pill.
@Hip Is Nexavir available in the US and why did you stop after four mos if it was helping?
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!
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!
@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.
I should mention that I also have Lyme as another complicating factor.@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 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.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.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.
$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.Also does Valcyte always cost $8 per pill?!!
@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?!!'
$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.
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.
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.
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.
@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???