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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. leokitten

    leokitten Senior Member

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    As many of you know, no one in the scientific or medical community knows exactly why Valcyte improves symptoms for many CFS sufferers. Just want to know people's opinions and thoughts, especially from those who are or have taken Valcyte and how they felt it was working and changed their disease.

    Is it more because the drug inhibits viral replication and reduces viral load of damaging viruses or more because the drug modulates or suppresses the immune system therefore reducing a dysfunctional immune response?

    This answer to this question if we ever find it will give a clue as to what are possible major causes/contributing factors to CFS, viral infection or autoimmunity (or both)?
     
    aimossy likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Not sure if it modulates it in a good way but many of us have low neutrophil numbers after being on it awhile. Testing here in australia is quite crappy(was going to say poor but thats to nice) as we cant get viral titres here most of the time?? I also think the neutropenia i have is the cause of my ongoing sinus issues that respond well to abx but return whenever i stop them.

    But i can say with antivirals in general as well as valcyte, that my elevated t cells have slowly come down, cd8 just above normal range.

    I had recently came off valcyte for 2 months and had a return of headaches, felt like more inflammation in my head as well as increased fatigue. Inflammation and headaches seem to ease within a week and fatigue recently improving.

    With the available testing i have available its hard to tell how long i need on valcyte. I did have quite low nk function but that testing was only available to me when i was in a research study. I can get nk numbers and they have always tested normal but i am aiming to get these numbers higher if i can.

    cheers!!
     
  3. vamah

    vamah Senior Member

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    6 mos on valcyte and my hhv6 titers went from 1:1280 to 1:320, so it is impacting the virus. I did have one of my symptoms (OI) improve during this time. Otherwise, I felt about the same or felt other improvements were due to getting more rest, so I'm not sure how much good it is doing me. I do suspect that I may have other issues besides the hhv6, though, so maybe it is doing what it can.
     
  4. leokitten

    leokitten Senior Member

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    What is OI?

    I've been on Valcyte (1350mg/day) and Famvir (2000mg/day) for the antiviral part of my treatment for just over a month. Since my theory is to treat as much as possible together and as quickly as possible I'm also taking all kinds of other medications and supplement protocols.

    Maybe it's because I've caught things relatively early in my disease, maybe it's because I'm treating aggressively, maybe it's something else, its really impossible to know, but even just after one month I have noticed some major improvements, my fingers are crossed.
     
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  5. leokitten

    leokitten Senior Member

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    Orthostatic intolerance sorry
     
  6. leokitten

    leokitten Senior Member

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    vamah have you also tried aggressive low blood volume treatment to see if that helps with OI?
     
  7. SOC

    SOC Moderator and Senior Member

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    Not sure I have a reasonable guess about the actual function of Valcyte, but I can share my experience.

    Daughter and I both had active HHV6 and EBV, but no CMV infection at all. On Valcyte, our flu-like symptoms cleared up or improved as did a large part of our cognitive symptoms. These symptoms have not returned in the roughly 2 years we've been off Valcyte. Based on that information, my best guess is that the effect, for us at least, was not in suppressing an autoimmune condition. I would expect our conditions to start declining again after stopping Valcyte if the main effect was immune suppression. In fact, we have both continued to very slowly improve, which could be consistent with healing of some damage done by the virus.

    Unfortunately, the first immune data I have begins just as I stopped Valcyte, so I can't compare before and after Valcyte, just what's changed in my immune labs since.
    T0 -- at the end of Valcyte treatment
    T1 -- ~10 months post-Valcyte
    T2 -- ~20 months post-Valcyte (results pending)

    My total B cell number, CD4+ cell number, and NK cell number are normal, but all declined from T0 to T1.

    CD8+ count was low at T0 and even lower at T1.

    CD8+CD95+ count was very low at T0 and even lower at T1.

    CD4+CD38+ count (which I'm told is indicative of viral infection) was very high at T0 and even higher at T1.

    I also have a number of cytokine abnormalities which changed over the first 10 months post-Valcyte (and not for the better as far as I can tell). The most consistent abnormalities are very low IL-17 and IL-23, both of which were low at T0 and even lower at T1.

    I'm no immune expert, but these data don't seem to be consistent with an autoimmune condition that was controlled by Valcyte at T0 and not at T1. As far as I can tell, it looks more like a chronic viral infection that is not under control.

    I have loads more immune data, so if you think it will help you develop your thinking about the effect of Valcyte, let me know what data you need. If I have it, I'm happy to share.
     
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  8. Legendrew

    Legendrew Content team

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    If you believe the most recent publications on the topic then a better question has to be does it work at all? Of course I've read numerous times people claiming they have improved greatly on it so it's certainly worth a second look but I have to question whether it is worth the cost for most patients given its somewhat hit and miss effects. Antivirals in general are not good drugs though and I think it's always worth keeping that in mind, furthermore developing antiviral drugs is incredibly difficult. I for one am in the camp believing it is the immuno-modulatory effects that gives some mild improvement.
     
    aimossy likes this.
  9. vamah

    vamah Senior Member

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    I haven't been tested to see if I have low blood volume. I have always had lowish -- although not technically "low" -- blood pressure. I don't know if that's a symptom. Also don't know if there is I specific definition of OI that I fit. I have kind of been using that term casually to mean that I get dizzy and sweaty if I stand for too long.

    As far as valcyte, I did 1800 a day for 3 weeks, then 900 a day for about 5 mos. That's when my hhv6 tested at 1:320. Because that's still fairly high, I went back to 1800 and have been on for about 7 weeks. Go to the doctor tomorrow and will get retested.
     
  10. Valentijn

    Valentijn Activity Level: 3

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    Something to look for can be low pulse pressure, which is the difference between the systolic and diastolic values. If it gets low (under 30 or so) on a regular basis, it can cause symptoms and disability.

    It is treatable, and can make life a bit more pleasant :D
     
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  11. leokitten

    leokitten Senior Member

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    Why are you doing Dr. Montoya's old Valcyte protocol? He doesn't do this anymore and I believe no one else does either. The reason is for many people 1800 mg/day for a long time is too too toxic and will cause its known blood and bone marrow side effects and 900 mg/day might be too little and will take much longer to have the desired effects.

    I think Dr. Lerner's protocol of 1350 mg/day (900 mg AM, 450 mg PM 12 hrs later) and staying on this dosage for a least one year is a good idea for most people.
     
    SOC likes this.
  12. leokitten

    leokitten Senior Member

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    SOC thank you for giving such detailed information and data. Even though it is for a single person I still think its very valuable.

    One question, did Valcyte ever improve any of your (or your daughter's) physical symptoms? Everywhere I seem to read that Valcyte can give people significant improvements with brain fog, cognitive and neurological symptoms but never anything about improving the physical symptoms of this disease.
     
  13. vamah

    vamah Senior Member

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    I will certainly discuss with my doctor when I get my latest test results back. Thanks.
     
  14. SOC

    SOC Moderator and Senior Member

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    Yes, one data point doesn't mean much, but perhaps if you manage to gather more data you'll be able to develop some hypotheses. :)


    My daughter, uncle, and I all got significant improvements in fatigue and cognitive symptoms with Valcyte. Both my daughter and uncle do not have excessive fatigue, PEM, or CFS-type muscle pain anymore. They are both functioning normally.

    My daughter and I both got significant improvement in cognitive function. My daughter's cognitive function appears normal (she's in graduate school in engineering) while mine, although very much improved, is still well below normal for me.

    Daughter and I both still take thyroid meds and Florinef to deal with persistent symptoms.
     
  15. leokitten

    leokitten Senior Member

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    So you and your daughter both have hypoaldosteronism and not hypocortisolism? This is very rare wow
     
  16. SOC

    SOC Moderator and Senior Member

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    Not so rare in ME/CFS. Check with patients here or any number of ME/CFS specialists. Have you seen the ME/CFS Primer for Clinical Practioners?
     
  17. leokitten

    leokitten Senior Member

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    I have it on my desktop to use as a reference :), sorry it was so chock full of info I didn't remember that fact thank you!

    Did you do 24-hr urine aldosterone or which other lab to diagnose?
     
  18. SOC

    SOC Moderator and Senior Member

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    My cardiologist didn't bother to do any tests. :rolleyes: Given low blood volume is common in ME/CFS and my pulse pressure is consistently low, he went straight for the Florinef.
     
  19. vamah

    vamah Senior Member

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    No, mine are usually 35-40 points apart.
     
  20. catly

    catly Senior Member

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    I started on Valcyte in early June 2013, I did 2 weeks of 1800 bid and then went to 950 bid. I did have some early improvement but then I think I did too much as I started to feel better in end of June/July (WARNING) and then in Aug I had surgery to remove 1/2 of my thyroid so that set me back a bit as well. I'm coming up on 5 months of treatment and will be retesting my HHV-6 titers and NK activity next week. Also seeing a new Rheumatologist in a couple of weeks since I have a + ANA and want another opinion.
     

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