August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Valycte Question

Discussion in 'General ME/CFS Discussion' started by CFS_Kristin, Feb 25, 2018.

  1. CFS_Kristin

    CFS_Kristin Senior Member

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    For those of you who are on Valycte, how long did it take before you noticed a difference or improvement?

    Just started 450 mg, 2 x a day about a week ago.....thanks!
     
  2. Hip

    Hip Senior Member

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    Dr Martin Lerner's clinical trials show that improvements will begin to appear at the 3 or 4 month stage, with the full benefits taking 1 or 2 years to manifest.
     
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  3. lindasch100

    lindasch100

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    I am somewhat different than most. I started Valcyte 1800mg At the end of the 4th day I opened my eyes wide and said (out loud) "I feel different". And many of my autonomic symptoms started to improve. After 2 weeks, the dose was reduced to 900mg and I went downhill. Later back up to 1800mg and the very same routine. At the end of the 4th day "I feel different". I have been on that dose for 10 days and better each day. But we are waiting for blood test results on my liver (may be a problem). If so, back to a lower dose.
    Everyone I have heard of has to be on it for months, although Jennifer Brea (Unrest) took Valcyte and her movie implied that she had very fast improvement.
     
    Gondwanaland likes this.
  4. Timaca

    Timaca Senior Member

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    It was after about 4 1/2 months of taking it that I woke up and thought "I don't feel as sick anymore." It was the day after Thanksgiving. I was so grateful. I am currently on Valtrex.... 500 mg twice a day. I tried to reduce it to once a day and that did not work.
     
  5. Learner1

    Learner1 Forum Support Assistant

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    Pacific Northwest
    I started on 1.8g a day and my brain fog cleared during the first 30 days. My viral PCRs were negative after 5 months. I've been on it 9 months. My doctor just reduced it to 900mg today, and we're going to see how I do.
     
  6. lindasch100

    lindasch100

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