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Frustrated with lack of progress with Famvir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Marianarchy, Jan 16, 2013.

  1. Marianarchy

    Marianarchy

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    I began Famvir 7 months ago. I quickly was able to work up to 2500 mg daily (2x 500mg tabs am & pm+1x 500mg tab at lunch) I haven't been able to tolerate a higher dose than that without horrible headaches and dizziness. I'm treating EBV, HHV-1, HHV-6 and Coxsackie B3.

    Before Famvir, my viral titres of EBV and HHV-1 were higher than the lab measures and HHV-6 was 1:320. NK cell functional assay was 26. I just got labs back and my viral titres haven't budged and my NK cell functional assay fell to 11. Since receiving this disheartening news, I have added in inositol 500mg twice daily and Equilibrant twice daily over the past few weeks (I started slowly and worked up).

    I'm scheduled for a followup visit with Dr. Kogelnik at the end of the month and considering switching to Valcyte. I have been very concerned about the Valcyte toxicity and chose Famvir because of it. Fortunately my liver and kidney panels have remained in the normal range throughout the Famvir treatment. I don't have health insurance so I have been paying for generic Famvir out of pocket. I'm so frustrated that I have spent so much time and money and still feel awful.
  2. RUkiddingME

    RUkiddingME Senior Member

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    Sorry to hear about your test results. I tried Valtrex, then Famvir (4 months at high dose) with no change in my viral titers. I see Dr. K as well and I just started on the Valcyte January 6th. If it helps any, you can look up Valcyte 2013 where I will be blogging my progress (or not) on this site. Best of luck to you
  3. SOC

    SOC Moderator and Senior Member

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    Are you aware that Valcyte is very, very, very expensive? For a 1350mg dose it costs more than $50,000 per year. There's no generic. You'll also need frequent labs (~monthly) to watch for potentially fatal side effects. If you still want to try it, you might want to call the manufacturer to ask about patient assistance program to pay for the medication.

    I know -- boy, do I know -- that it's hard to be patient. Antivirals are not a quick treatment for ME/CFS. Nothing is, of course. :( Seven months is not very long, so there's still lots of hope that the Famvir will help you. :) Don't be discouraged about your viral titres not dropping; they often don't go down for a long time and can even go up before they go down.

    Bad news about your NK cell function. I wonder if improving your NK cell function will help the antivirals work better. As you may know, antivirals slow or stop viral replication, but your immune system still needs to kill off infected cells or you have to wait for them to die of old age. The antivirals don't do that bit.

    Best of luck with your treatment.
    jeffrez, taniaaust1 and heapsreal like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My nk function didnt alter with antivirals even though i have improved on them. my first 6 months on famvir i just noticed i wasnt 'crashing' , 12 month mark i was able to tolerate activity better etc and had made noticeable improvement, my dose was 250mg twice a day.
    generic valcyte is available through http://www.universaldrugstore.com/medications/Valcyte still not cheap but best price i have found. the recommended dose is 2 tabs of valcyte a day but maybe with 1 tab a day and staying on famvir one could get just as good of improvement??
    jeffrez and SOC like this.
  5. Marianarchy

    Marianarchy

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    Thank you for the insight and reassurance RU, SOC and Heaps!

    I'm haven't been working for the past year and a half, so Dr. K told me I would efinately be able to qualify for the Valcyte patient assistance program. My current costs for generic Famvir is $370 per month. I found a website for discounted lab fees, so I'll be able to get that done for about $160 monthly if I test on a weekly basis.

    Dr. K warned me that we wouldn't know if the Famvir was working for 4 to 6 months. From the reading I have done on this site, it sounds like many patients find it takes much longer to determine if the AV they are on is helping. I like Heaps idea of combining the Famvir and the Valcyte at lower doses. Maybe I could avoid some of the Valcyte risks and not lose ground if the Famvir is in fact helping.

    I haven't been on the Inosine and Equlibriant for very long. Does anyone know how long it takes to improve the NK cell function (if is going to work)?
    RUkiddingME likes this.
  6. Daffodil

    Daffodil Senior Member

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    i have never heard of the NK cell function going to normal levels (60- 80) with antivirals alone. my NK cell function went to normal levels only twice: once with AZT (eventually it dropped again), and once when I started GcMAF (not sure what it is now but I am sure it is not normal anymore). I have also heard it happening with Ampligen but I have never tried that.

    it appears we need to target a kind of infected cell that antivirals do not necessarily target...perhaps a latent infection of some kind?
    heapsreal likes this.
  7. SOC

    SOC Moderator and Senior Member

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    Same here, I don't think antivirals typically affect NK cell function. It's more likely that the NK cell dysfunction allowed the viruses to reactivate.

    There's been some talk about some immune modulators improving NK cell function, though.
    vli and heapsreal like this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    We dont know?? but maybe the nk dysfunction came first which is why we get infections, this being the case antivirals wont increase nk function but if chronic infection caused nk function to drop then maybe antivirals can help improve nk function, chicken or the egg thing??
    vli likes this.
  9. Daffodil

    Daffodil Senior Member

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    to be frank, i dont think we had an NK cell function problem to begin with. I think something might be infecting our NK cells.
    Marianarchy and heapsreal like this.
  10. anniekim

    anniekim Senior Member

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    Marianarchy, sorry you are not having any improvements yet on famvir. May I ask are you pulsing your inosine or taking it daily? Did dr k suggest inosine over immunovir? Many thanks
  11. vli

    vli

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    My NK cell func went up from 4 to 22 in six mos of ampligen so i agree w SOC. BUT, I and another Ampie here i think agree that the antiviral effects of amp aren't as great as theyve been touted, and in fact that's why i've stopped amp and am going back to my temporary home of UK next week to fully launch into valcyte. the amp just wasn't enough to suppress my hhv6.
  12. SOC

    SOC Moderator and Senior Member

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    I suspect you're right. It could be, however, that a genetic immune abnormality goes unnoticed for a long time until the infections build up. I'll be glad when they get this all figured out.
    Marianarchy likes this.
  13. SOC

    SOC Moderator and Senior Member

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    I can easily see the possibility that we need to improve immune function and take antivirals to get at deeply entrenched infections.
    heapsreal likes this.
  14. vli

    vli

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    Agree 100%. However, so expensive.
    SOC likes this.
  15. Daffodil

    Daffodil Senior Member

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    wonder why some respond SO well to ampligen and some do not do that well.

    as i have always reported, 2 things made my NK cells jump to normal levels and then back down eventually. One was AZT and the other was GcMAF.

    obviously, we are infected with something :(
  16. Marianarchy

    Marianarchy

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    I am inclined to agree that there is an underlying genetic immune problem. My father died from a rare systemic fungal infection a few years back. I mentioned it to every doctor I saw. Many of them replied that he probably had a genetic immuno-deficiency. A few years after that, my strange neurological symptoms were attributed to multiple viral infections.
  17. Marianarchy

    Marianarchy

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    Dr. K didn't advise me to take inosine. I decided to take it on my own. I see him at the end of this month and plan to ask him about immuno modulators.
    anniekim likes this.
  18. niall

    niall

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    From what I have gathered, it may take as long as a year before you will be able to judge if the Famvir is helping you. I am taking 250 mg of Famvir per day and only started as the beginning of November. I did get a significant benefit from a year of Ampligen which ended on Oct. 5th. I have held on the those gains but don't see any further improvement yet. So I would urge patience at this time.
    SOC and Marianarchy like this.
  19. Ruthie24

    Ruthie24 Senior Member

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    @Marianarchy- did you see Dr. Kogelnik at the end of January and ask him about immune modulators? Curious if he prescribed you something.
  20. Marianarchy

    Marianarchy

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    I did see Dr. K. I had discontinued the Inosine by the time of my appointment due to the side effects. Dr. K added Valcyte to the Famvir I was already taking. We briefly discussed LDN and he said that his patients who responded to it were patients where pain was a severe symptom (I don't have that). He didn't believe it increased NK cell function. He said if 6 months of Valcyte/Famvir didn't improve my symptoms, I could apply to be in an upcoming Rituximab study.
    heapsreal likes this.

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