The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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How to stop valcyte?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by BrianD15, Nov 24, 2017.

  1. BrianD15


    For folks who have stopped taking Valcyte: how exactly did you do it and how did your body respond?

    Did you just stop cold turkey or did you wean down slowly? Did you experience any temporary rebound symptoms that eventually went away?

    I started on Valcyte about 6 months ago because I had high CMV titers. Since then my CMV igm has gone negative and my igg has lowered a lot - so basically it seems like the virus has gone dormant. Based on the titer improvement, my doctor instructed me to try stopping valcyte.

    Originally I started on 1800 mg of Valcyte per day and it made me feel great. But over time the side effects got worse and worse. I had a harder time sleeping and needed more and more melatonin. And mental side effects (agitation, anxiety, sadness, feeling wound up) also continued to increase over time. I found it helpful (with respect to side effects) to drop down to 1350 mg / day, or even alternating between 1350 mg and 900 mg every other day. But I'm still having tough mental side effects at that level, so I want to do everything I can to reduce further or stop entirely.

    I'm trying to figure out if I'll be more successful by stopping cold turkey or by weaning down slowly. So far I've been trying the weaning approach.

    I'm interested to hear how it worked for other folks.
  2. Wonkmonk

    Wonkmonk Senior Member

    I have no experience with Valcyte, but as no one else commented, maybe I can ask what virus are you targeting?

    If it is EBV, you might consider switching to Vatrex, which is much better tolerated. It also has some effectiveness against CMV at a high dose.
  3. JeanneD

    JeanneD Senior Member

    Bit late now, but for what it's worth at this point -- my daughter and I both took Valcyte and both tapered down. It's probably not absolutely necessary, but imo it's wise to make any medication changes slowly given the sometimes peculiar ways our bodies respond to things. Since there's no harm in tapering, you might as well go that way rather than jar your body with a sudden change.

    Neither of us had any reaction to tapering off Valcyte.

    1800mg is a high dose. IIRC most ME specialists don't use that dose anymore because the side effects at that level are difficult for many people. That doesn't mean it's a wrong or inappropriate dose, just difficult for some. Some specialists use a lower dose for a longer time. It's largely a matter of what they have found works best in their practice.
    Last edited: Dec 12, 2017
    Learner1 likes this.
  4. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    My ME/CFS doc has me on 1800mg of Valcyte a day. I've had no side effects, but it's sure helped my brain fog. I take methylation syppprt, B5, and antioxidants which may help me metabolize it better.
    JeanneD likes this.
  5. jstefl

    jstefl Senior Member

    Brookfield, Wisconsin
    It has been almost 10 years since I stopped Valcyte. I was taking 900 mg a day, 450 in the morning and 450 mg at night.

    I stopped taking it cold turkey when I ran out of pills.

    1800 mg a day sounds like a very large dose. I had good success taking 900 mg a day for the 10 months I was on it. I had regular blood testing done to make sure that there was no damage being done by the Valcyte.

    I was very fortunate in that I had no adverse side effects from the Valcyte while I was taking it, or when I stopped.
    JeanneD likes this.
  6. JeanneD

    JeanneD Senior Member

    It really helped my cognitive dysfunction, too. I also did methylation support, B vitamins, Vit C and other antioxidants and silymarin since valcyte can be hard on the liver.

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