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Valcyte--how long do you take it?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Marianarchy, Feb 10, 2013.

  1. Marianarchy

    Marianarchy

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    For those who have taken Valcyte, can you tell me the typical length of treatment? I think Dr. Montoya's study was for 6 months of treatment with Valcyte. Do other doctors prescribe it for longer periods of time? I know it is typically used in transplant patients to treat and prevent CMV infections. Is it prescribed for longer than 6 months in those patients?
     
  2. RUkiddingME

    RUkiddingME Senior Member

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    Hi Marianarchy; Check out the attachement with Dr. Martin Lerner's treatment protocol. It states a year for Valcyte (page 11). Hope this helps :)
     

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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    im coming up to a year on valcyte for cmv, its helped me out alot. At this stage it looks like i will be stopping at the end of march(12 months) but will continue with famvir and immunovir. next week i should get some test results back to see if my cd8 t cells have come down, this is the test my doc uses for viral activity for ebv/cmv, cant get titres done in australia. They have come down with famvir and valcyte, my last test showed they had come down but still above normal, so some activation still going on.

    I have low nk function but could only get this test done in a research study i was in but nk numbers i get from my doctor and normally its in the low normal ever since i have tested it, so if its gone up i will use it as a guide that immunovir is also helping but not definative as nk function i would think can improve without numbers going up??

    So depending on all these tests will dictate if i stop valcyte. To tell you the truth im pooping my pants about stopping this as the thought of a relapse is scary, but atleast i know valcyte works for me. There have been some cases of people improving more so once off valcyte too, i suppose we just dont know??

    good luck.
     
  4. PGHCFS

    PGHCFS

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    I am still working with the Equilibrant and Inosine right now, but I was wondering how you get a doctor to prescribe Valcyte? If this doesn't work, that might be the next step.
    My doctors are no help to me at all, I am on my own.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not from the US but there are a few cfs/me experts in your country, hopefully someone chimes in with a helpful doc in your area. Maybe u could be able to travel to see another doc(cfs) and a gp in your local area support your treatments along the way. if u test positive to cmv and or hhv6, cfs doc i would think prescribe valcyte. Famvir is another option to start with that is alot more affordable and maybe your current doc would feel more at ease prescribing this med for you. It has some activity against most herpes viruses.
     
  6. PGHCFS

    PGHCFS

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    Ok, thanks.
     
  7. SOC

    SOC Senior Member

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    You need to have high titres for HHV-6 or CMV to get Valcyte. Even then most docs won't prescribe it or won't prescribe it for as long as PWME need it. Your best bet is probably to go see Dr Lerner in the Detroit area. He is (I think) the most experienced doc with Valcyte and ME/CFS in the world. It's a long trip to take every 6 weeks or so, but worth it to get Valcyte (assuming you need it).

    My family did the trip for 2 years and we're even farther from Dr Lerner than you are. I had a substantial improvement and my daughter is in remission because of Valcyte. She is young and was less ill and we got her into treatment relatively quickly which may explain the difference in our outcomes.
     
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  8. Marianarchy

    Marianarchy

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    My CFS doc worked with Dr. Montoya at Stanford on his Valcyte study. Unfortunately, he is on the west coast.
     
  9. Yocheved

    Yocheved Spoonless In Seattle

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    Where on the west coast? I'm in Seattle, but I can do some moderate travel.
     
  10. Marianarchy

    Marianarchy

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    Yocheved he is in the SF Bay area. I sent you his contact info.
     

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