New to boards Super sick 4th week on Valcyte

Discussion in 'Fibromyalgia Main Forum' started by scrappytngirl, Jul 27, 2008.

  1. scrappytngirl

    scrappytngirl New Member

    Hi to all - New to boards - I have CFS, EBV, FM and a nasty form of pneumonia.

    I am happy to finally find what looks like a good board.

    Is there anyone else taking Valcyte? I am on my 4th week and really sick. I hear that is a good sign - means the virus is dieing off. Any thoughts?
  2. sascha

    sascha Member

    i've been off it for about 1 1/2 mos. now. have started on valtrex. it IS quite a trip- i was so glad to get off it- but also i am very glad i went through it because my HHV6 came way down, and my cfids status seems to be changing for the better. i have to be patient about getting strength and energy back, but some of the sick cfids symptoms seem improved.

    so, be very patient. i think early on valcyte effects are from the impact of the drug itself. by 4 weeks you could be feeling effects of the valcyte working on the viruses. a few people don't get many harsh side-effects; some get a lot of side-effects (me)- Dr. Montoya said there's not necessarily a correlation between how rotten you feel and the good work valcyte is doing. the only way to really know is do the full course and be re-tested; then come out of the valcyte and gradually take stock, but Dr. Montoya recommends 12 months of rest and not over-doing post-valcyte before you really might know its results.

    there are many people on this board who have been through the valcyte, and there is lots of inf. in past posts from them. you could write in 'valcyte' in the search window and see what you can find.

    plan your life so you can thoroughly rest throughout the treatment period- and after as well- and don't be surprised at anything you go through. that valcyte can do a number on you!! very best of luck to you- Sascha
  3. scrappytngirl

    scrappytngirl New Member

    Thank you very much for info on Valcyte. I will look it up in past posts. Makes me feel better to know that there are others out there going through the same junk! Take care -
  4. deserella

    deserella Member

    Hang in there! It's not easy but you have taken a very brave step. I have been off valcyte for about 6 weeks now. I was on it for almost a year. I journaled how I was feeling on a blog so that other people on valcyte could know what to expect and compare symptoms, ect. So check it out and it may help you give you an idea of what to expect. Best wishes to you;