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Valcyte: does it work because of its antiviral or immunomodulatory properties (or both)?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by leokitten, Oct 23, 2013.

  1. Christopher

    Christopher Senior Member

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    What is the evidence of antivirals suppressing immune function? My NP claims that as well but I was unable to find any proof of this.
     
  2. leokitten

    leokitten Senior Member

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  3. leokitten

    leokitten Senior Member

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    @vamah you live in the DC area like I do, I could never find a good CFS specialist in the DC or Baltimore area who do you see?
     
  4. leokitten

    leokitten Senior Member

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    What was your ANA titer? It is common in CFS to have transient ANA elevations, soon after getting sick my ANA was positive and I believe due to the fact that my immune system went into overdrive trying to fight infections and it's known that when you immune system is really turned up a side effect is slight autoimmunity.

    More recently has been negative as my immune response has calmed down and I've started to feel better. I wouldn't necessarily worry unless you have other more specific lab tests showing evidence of things like RA, SLE, etc. ANA by itself is nonspecific and can be misleading.
     
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  5. vamah

    vamah Senior Member

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    I don't have a me/cfs specialist. I'm not even diagnosed with cfs (don't really care, its a trashcan diagnosis in my opinion). I do have a very caring, open-minded doctor who is willing to test for anything I want and try different treatments, as long as he sees no harm in them. And he takes insurance, which a lot of specialists seem not to do.
     
  6. leokitten

    leokitten Senior Member

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    Ok, just want to help and please take this in the nicest way, from what I read about your Valcyte treatment regimen your doctor is doing it all wrong. I don't understand why s/he is having you do it this way where you go up to 1800 mg/day for a few weeks than down to 900 mg/day for a while then back up to 1800 for a while and so on.

    With Valcyte and other antivirals, it is a long-term treatment where you start low and quickly build up to the target daily dosage which you then maintain for at least one year. Starting low and building up for the first week or so in the treatment is to check CBC, liver, kidneys and how you tolerate the drug.

    From what I know all CFS doctors do it this way and as I said generally the best target daily dosage to take for at least a year is 1350 mg/day (Lerner and Montoya do it this way). Some people can handle a long term target of 1800 mg/day to try and get faster results but it can be hard to tolerate for others. 900 mg/day is usually too little especially if you have no problems tolerating the drug and going up and down up and down in dosage is not recommended at all unless there is another issue like liver or blood problems.

    Many people don't know this about Valcyte but it was designed to work best against CMV and works only reasonably against HHV-6 because it has a 20-fold lower intracellular concentration in HHV-6 infected cells when compared to CMV infected cells in vitro.

    This is because Valcyte (actually ganciclovir since Valcyte is a prodrug), like the other nucleoside analog antivirals, needs to be initially phosphorylated by specific viral kinases to "activate" it. It is phosphorylated very well by the CMV UL97 protein kinase but not as well by the HHV-6 UL69 phosphotransferase (the HHV-6 homolog to CMV UL97) and therefore has 20-fold lower concentrations in HHV-6 infected cells.

    Anyway, that's why 900 mg/day might not be enough to get results within one year.
     
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  7. vamah

    vamah Senior Member

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    I decided last week to go to 1350 a day now. Hopefully, I will get my hhv6 test results back this week and see where I stand. I had gone with the Montoya protocol because I know someone who brought hhv6 levels down to undetectable using that protocol. That person' s levels were never anywhere near as hign as mine, though, so that might explain why 900mg was enough.

    On the previous question. Ema had posted the names of some lyme specialists in the DC area on one of the lyme threads. When I checked them out, at least 2 of them seem to take cfs patients as well. None of them seem to take insurance, though.
     
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  8. SOC

    SOC Senior Member

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    Neutropenia (abnormally low number of neutrophils in the blood) is a known potential side effect of Valcyte. That can leave you susceptible to infection. This is probably what your NP is referring to. It is also what scares many docs away from using Valcyte.

    Good docs using Valcyte check neutrophils monthly and reduce Valcyte dosage (or stop entirely) if neutrophil numbers drop too low. The low neutrophil effect is reversible if caught before the neutropenia is severe, so the risk is not as great as many docs think it is.
     
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  9. Christopher

    Christopher Senior Member

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    Thanks SOC. I did know about the neutropenia with Valcyte. My NP stated that all antivirals have immunosuppressant qualities, which I haven't seen on Google anywhere. Thankfully I have an appointment with Sue Levine next week who will hopefully do some more thorough testing. I would think that if you do have active infection, your immune system is already underperforming and antivirals could improve the situation.
     
  10. SOC

    SOC Senior Member

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    I haven't seen data that all antivirals have immunosuppressant qualities, either, but it could be true. I think there's a lot we don't know about antivirals -- they're all relatively new.

    It seemed to work that way for me. :D

    Good luck with Dr Levine!
     
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  11. leokitten

    leokitten Senior Member

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    Yeah Dr. Levine is awesome and a very kind doctor. She will fight for you!
     
  12. Christopher

    Christopher Senior Member

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    It could be true, but when a doctor makes that claim without sources, I'm less likely to trust him with this serious condition.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Time will tell, but i think my neutropenia is from valcyte. The last fortnight i have been using AHCC herbal extract to help increase immune function. There is abit of science behind using ahcc in cancer patients undergoing chemo and it protects their immune function from the chemo. In a couple of weeks time we will see if this is the case with my neutrophils, also interested to see if it increases my nk numbers.

    cheers!!!
     
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  14. leokitten

    leokitten Senior Member

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    Doctors always say a lot of misinformation and should always be checked.
     
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  15. leokitten

    leokitten Senior Member

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    I take AHCC everyday as part of my supplement treatment.
     
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have u seen changes to nk function/or numbers and has it kept your neutrophils up?
    The changes i have noticed in the short time being on ahcc that my sinusitis is almost gone 'touch wood', so maybe its improving my immunity as sinusitis is very common in immune suppressed people.
     
  17. leokitten

    leokitten Senior Member

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    Only had NK function (13 LU) measured once during CFS diagnosis back in September. All my WBC counts have been completely normal so far on Valcyte (knock on wood :))

    A month or so before I got the sudden flu illness in January I started having a chronic sinus infection and every morning when I blew my nose there was dark green snot indicative of an infection even though I didn't feel sick at all! It was really weird.

    Something definitely was getting screwed up with my immune system leading up to the fall, and the sinus infection continued with green snot every morning since January until maybe a couple weeks ago. As I've started to feel better on my aggressive treatment and supplements it seems to have gone away.

    Now as you know by my posts the way I'm treating myself I wouldn't be able to tell you what is making what go away because I'm doing so much at once. Dr. Teitelbaum says that Candida overgrowth gives you chronic sinus infections or sinusitis so treating that will make it go away. I have been treating Candida along with everything else but would never be able to tell you what drug or supplement I am swallowing is fixing what ;-)
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A few months ago was tested for fungal sinusitis which was neg. I respond well to abx but it has been just coming back when i finish them, so probably staph and due to neutropenia which i was getting prior to valcyte use intermittently anyway. Have done several long courses of different abx but not since the ahcc has it been this well. ALso just prior to the ahcc i did do a course of nasal spray abx which had bactroban, gentamycin and edta which helped alot, so maybe the ahcc just finished the buggers off??

    I think the secret to retaining ones gains and not relapsing after finishing antivirals and abx is to somehow get the immune system working, just stating the obvious;)
     
  19. leokitten

    leokitten Senior Member

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    Coming back to this topic after 1.5 years... :)

    Knowing more now about autoimmunity and how drugs like Rituximab appear to work in such diseases and ME/CFS, I have to say I believe more and more that most of Valcyte's success in ME/CFS actually comes from the fact that it's suppressing/modulating your immune system. Don't get me wrong I do think a significant effect does come from slowing any active replication of EBV, CMV, HHV-6 in people who have high titers. But just like Rituximab, Valcyte takes a long, long time to work and there is this big lag in symptom improvement. This is generally not how viral infection symptoms improve it doesn't take that long to push herpesviruses into latency, but autoimmune symptoms do follow this pattern.

    Valcyte definitely suppresses/modulates the immune system in a very blunt way. Doing so many CBCs w/ diff during my first course (over 1 year) I always saw that it pushed my WBC and while blood cell differential numbers down, including lymphocytes (which incl. B cells). This would definitely suppress autoimmunity too. And, like most people who've taken it, I didn't have any major symptom improvement until well over a year of taking it.

    The thing though is that Valcyte is such a blunt instrument when it comes to dealing with autoimmunity, it's just toxic to white blood cells and reduces autoimmunity as a side effect. Would be much nicer to have a targeted therapy!
     
    Last edited: May 4, 2015
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  20. IreneF

    IreneF Senior Member

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    I saw Dr. Montoya today and asked him whether the improvements I've been experiencing were due to anti-viral or anti-inflammatory effects. He says he doesn't know.

    He's trying to get funding for brain-scan studies, to look for more evidence of structural abnormalities in the brain, which may be linked to inflammation. He is also wondering if too many crashes might cause permanent tissue damage.
     

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