Valcyte- how long are you supposed to take it?

Discussion in 'Fibromyalgia Main Forum' started by ask2266, Feb 20, 2009.

  1. ask2266

    ask2266 Member

    I'm just curious. I don't mind feeling an increase of all of my symptoms as die-off, as long as I know what the cut-off date is. Thanks!
  2. Smurfette17

    Smurfette17 New Member

    I'm wondering the opposite (that is, when to expect the increase in symptoms to go). Dr. Lerner told me that it could take 6 months for me to see symptomatic improvement -- does that answer your question? What I want to know is how long the damn herx period is supposed to last. All I want after these last few days is to at least go back to my pre-Valcyte baseline.
  3. ask2266

    ask2266 Member

    I've heard that you can herx the whole time that you are on Valcyte; that's why I wanted to know how long you are supposed to take it. I'm pretty sure it is herxing, not because the antiviral is killing the virus but because your immune system is. All i can tell you is that you DO have to feel like $%^& to get better. It worked that way for me with the Valtrex/Famvir for EBV, and I was in remission for almost 18 months. I felt totally normal. It was worth the herx.

    Now, I'm back to antivirals again, this time Valcyte, but it's because I had a new surge of HHV6, with new cerebral symptoms, not because my EBV started acting up again. My EBV is still very low compared to what it was pre-Valtrex/Famvir.
  4. ladybugmandy

    ladybugmandy Member

    thats a great question. i know of some people who have taken valcyte for 6 years and are still not significantly better and i know someone who is on 6 pills a day and is still very sick.

    sadly, we are in the beginning stages of finding all this out...

  5. heapsreal

    heapsreal New Member

    So is an increase in muscle pain/tightness a herx symptom. 4 months of famvir and have had good improvement but of late, muscle pain has been increasing
  6. emmally

    emmally New Member

    I am going on 9 mths on valcyte and I think pretty much the idea is to take it until I am an 8 out of 10. Which means I would be almost recovered. What makes it so hard it that somedays I am a 5 out of 10 and the next day I can be a 2 out of 10. But the good thing is that the fluctuation in symptom severity is becoming less and I am beginning to more constant in how I feel. I think a couple of weeks ago I was almost moving up the ladder even more but than ofcourse as usual, I got freaking 3 infections (strep, bronchitis, etc.) and now I feel like I was out clubbing last night until 5am....oh how I wish (lol)...Also I think that the flares duing valcte cannot be predicted. I would have a month long one, feel better for a week and than have another. I can feel one right now trying to creep back on,(most likely due to the infections). The only thing i can do is hope and pray it goes away.I would think that at this point the virus is being held under control even though I still feel like crap. Apparently, even after the virus is put down, you can feel very ill for a long time....