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My possible Valcyte miracle!

RUkiddingME

RUkiddingME

Senior Member
Messages
220
Location
Canada
SOC said:
Congratulations! I remember how wonderful it felt when I was routinely driving again. :D
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Thanks SOC! I was wondering how long were you on Valcyte and how long have you been in remission since coming off it? Sure is amazing!!
 
SOC

SOC

Senior Member
Messages
7,849
Unfortunately, I'm not in remission, although I'm much improved. My daughter, on the other hand, is in remission -- or is fully functional -- whatever we want to call it. She still takes meds for some symptoms, but has no physical limitations and no PEM.

I was on Valcyte for 2 years. I've been off it for about a year and a half and am even better now than when I stopped taking Valcyte. I continue to take Valtrex to try to keep EBV and HHV-6 suppressed.

My daughter was on Valcyte about a year and a half, so she's been off it for about 2 years now with no signs of relapse.
 
SOC

SOC

Senior Member
Messages
7,849
To update my previous post -- shortly after that post daughter, and then a little later I too, started showing signs of HHV6 reactivation. We both went back on Valcyte in January. Daughter (and maybe me, too) probably should have gone back on the Valcyte in October. We left it too long. :(

So both of us lasted almost exactly 2 years off Valcyte before HHV6 became problematic again. I wonder if what's going on is that we diminish the viral reservoir enough that our immune systems can handle it for a while, but after 2 years of replicating in some tissue reservoir, it reactivates and/or becomes pervasive enough to show up in blood.

I'm feeling much better after about 3 months on Valcyte, but we caught mine pretty quickly. It looks like Daughter was reactivated for 3-6 months before she went back on Valcyte. She's not getting better as quickly, probably for 2 reasons. First, she was reactivated longer before she got treatment. Second, she is in graduate school in engineering and is effectively forced to not get as much rest as she needs for Valcyte to be most effective. Even so, she is feeling a lot better and is struggling along at 80-85% function.
 
RUkiddingME

RUkiddingME

Senior Member
Messages
220
Location
Canada
SOC said:
To update my previous post -- shortly after that post daughter, and then a little later I too, started showing signs of HHV6 reactivation. We both went back on Valcyte in January. Daughter (and maybe me, too) probably should have gone back on the Valcyte in October. We left it too long. :(

So both of us lasted almost exactly 2 years off Valcyte before HHV6 became problematic again. I wonder if what's going on is that we diminish the viral reservoir enough that our immune systems can handle it for a while, but after 2 years of replicating in some tissue reservoir, it reactivates and/or becomes pervasive enough to show up in blood.

I'm feeling much better after about 3 months on Valcyte, but we caught mine pretty quickly. It looks like Daughter was reactivated for 3-6 months before she went back on Valcyte. She's not getting better as quickly, probably for 2 reasons. First, she was reactivated longer before she got treatment. Second, she is in graduate school in engineering and is effectively forced to not get as much rest as she needs for Valcyte to be most effective. Even so, she is feeling a lot better and is struggling along at 80-85% function.
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So sorry to hear about that :(. What are the first signs of reactivation to watch for? My numbers are still high so I might be taking a risk by stopping it. I hope you and your daughter keep improving. It's a never ending battle isn't it...
 
SOC

SOC

Senior Member
Messages
7,849
A never ending battle indeed. :(

In our experience, the reactivation sneaks up very, very slowly so it's hard to notice things going south until it gets bad. For us, increased cognitive dysfunction appears to be directly related to HHV6 reactivation. We also notice that we start having trouble getting through the day without a nap -- just like when you have any other bad infection.

Daughter's HHV6 titres started increasing, but were not what would be considered high so we didn't immediately put her back on Valcyte. In hindsight, that was a mistake. HHV6 antibody titres can be high (from an old infection) in healthy people, but they probably shouldn't be increasing. Increasing would suggest viral replication and the body producing more antibodies to try to address the problem. With a demonstrated inability to keep HHV6 under control, it seems wise to jump on the first sign of reactivation.

If your doc is agreeable, I'd suggest doing an HHV6 titre every 3 months and jump back on Valcyte as soon as the titre increases, even if it's not high. That's my plan for the future, assuming my doc cooperates. :)
 
RUkiddingME

RUkiddingME

Senior Member
Messages
220
Location
Canada
SOC said:
A never ending battle indeed. :(

In our experience, the reactivation sneaks up very, very slowly so it's hard to notice things going south until it gets bad. For us, increased cognitive dysfunction appears to be directly related to HHV6 reactivation. We also notice that we start having trouble getting through the day without a nap -- just like when you have any other bad infection.

Daughter's HHV6 titres started increasing, but were not what would be considered high so we didn't immediately put her back on Valcyte. In hindsight, that was a mistake. HHV6 antibody titres can be high (from an old infection) in healthy people, but they probably shouldn't be increasing. Increasing would suggest viral replication and the body producing more antibodies to try to address the problem. With a demonstrated inability to keep HHV6 under control, it seems wise to jump on the first sign of reactivation.

If your doc is agreeable, I'd suggest doing an HHV6 titre every 3 months and jump back on Valcyte as soon as the titre increases, even if it's not high. That's my plan for the future, assuming my doc cooperates. :)
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Thanks for the info :) I might be in trouble lol I already can't get through the day without a long nap plus my titers went up in November :(
 
heapsreal

heapsreal

iherb 10% discount code OPA989,
Messages
10,103
Location
australia (brisbane)
I dont have access to getting my titres tested but when i get the viral reactivation i get a global type headache that doent really go away and cognitive issues get worse quickly. Hard to imagine that i was once cognitively like that all the time. I usually give it a few days as sometimes the headaches can be sinusitis for me. So it takes me a few days to distinguish the 2. Sinus headaches are more forehead type headache, not global like viral infection and more fatigue with sinusitis and i dont have the cognitive issues with sinusitis like i do with viral symptoms. A couple of days on valcyte so good improvement and generally confirms my diagnosis??
 
SOC

SOC

Senior Member
Messages
7,849
heapsreal said:
I dont have access to getting my titres tested but when i get the viral reactivation i get a global type headache that doent really go away and cognitive issues get worse quickly. Hard to imagine that i was once cognitively like that all the time. I usually give it a few days as sometimes the headaches can be sinusitis for me. So it takes me a few days to distinguish the 2. Sinus headaches are more forehead type headache, not global like viral infection and more fatigue with sinusitis and i dont have the cognitive issues with sinusitis like i do with viral symptoms. A couple of days on valcyte so good improvement and generally confirms my diagnosis??
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Valcyte shouldn't work that fast since it just reduces viral replication. Your immune system still has to kill the infected cells. Or the infected cells have to die a natural death. That takes time.

It could be something else you're feeling, though. Maybe the Valcyte is having an anti-inflammatory effect...? Who knows? It's not like we know that much about these meds. ;)
 
heapsreal

heapsreal

iherb 10% discount code OPA989,
Messages
10,103
Location
australia (brisbane)
SOC said:
Valcyte shouldn't work that fast since it just reduces viral replication. Your immune system still has to kill the infected cells. Or the infected cells have to die a natural death. That takes time.

It could be something else you're feeling, though. Maybe the Valcyte is having an anti-inflammatory effect...? Who knows? It's not like we know that much about these meds. ;)
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who knows? if we catch it in the early process of replicating ?? I think montoya has mentioned valcyte having possible anti inflammatory effects.

Also what comes to mind with antivirals and dosing schedules is that sometimes they just give a one off large dose of famvir for cold sore and genital herpes infections like 1500mg famvir dose, where other schedules use lower more frequent and longer duration treatment schedules. Also hitting the infection within the first 5 days can make a big difference too. Shingles treatment is only 7 days long, i understand its not ebv/cmv/hhv6 but early treatment when symptoms start could be very different to an untreated chronic infection with a high viral load. A low viral load should be easier and quicker for the immune system to deal with it.The benefits of these short courses can help reduce side effects, which is what im trying to accomplish and avoid worsening neutropenia. So far so good.
 
heapsreal

heapsreal

iherb 10% discount code OPA989,
Messages
10,103
Location
australia (brisbane)
@SOC there was an article last year showing a shorter high dosages valcyte treatment course that montoya and peterson had put together. Lasting 6-8 weeks from memory. Did u hear any more on it or know anyone who tried it?

I think i stopped getting any further improvement after 6 months of valcyte, started at 1 pill a day and after about 3 months did a further 2 pills a day for another 3 months. After that i didnt really improve much more then that and was just on maintenance dose etc Hind sight i would have stopped after 6 months and then done maybe 6 week courses as required??
 
SOC

SOC

Senior Member
Messages
7,849
heapsreal said:
@SOC there was an article last year showing a shorter high dosages valcyte treatment course that montoya and peterson had put together. Lasting 6-8 weeks from memory. Did u hear any more on it or know anyone who tried it?
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No, I haven't heard much about it. A shorter course would be a great improvement. Do you know if they're using another med before, after, or along with the Valcyte?
 
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