Two Week Valcyte Update

Discussion in 'Fibromyalgia Main Forum' started by redhummingbird, Feb 2, 2009.

  1. redhummingbird

    redhummingbird New Member

    I thought I would post an update.

    I've been on Valcyte for two weeks. Other than some increase mood symptoms and a little increased fatigue (and the two episodes of really bad anxiety) I'm tolerating the medication fine.

    Of course, I'm worried this means I won't be a responder but I've also read that some people don't have the awful reactions and still respond so I'm trying to keep that in mind.

    So far my bloodwork has been normal.

    At times I've noticed I feel a little better.

    I've also been on the simplified methylation protocol for 7 months.
  2. ladybugmandy

    ladybugmandy Member

    i am glad you are posting updates! thats sort of how i responded to the drug, i didnt have major herx.

    of course, i didnt really get better. i seemed to for a while and then declined. still trying to figure out what that means.

    i suspect it has to do with how long i was untreated....

    best of luck
  3. emmally

    emmally New Member

    I didnt feel that much worse almost the first 2 months. I had increased nausea and other issues right away but I think they were more related to adjusting to a new medicine and feeling very nervous about whether it was going to work or not. I didnt feel better in the beginning at all like you explain (thats great though!!!!) but I too was beginning to think nothing was happening. I felt pretty much the same besides increased nausea and feeling a little weird. Than I started to get much much worse where at times, I couldnt even stand. I remember I couldn't stand longer than a couple of minutes before my legs would begin to shake. I couldnt even eat at times..(I had to miss thanksgiving dinner..:() But again, I have read too where some people dont really feel anything and valcte works for them and some people feel way worse and it doesnt work for them. Sooo I learned not to stress about things that really have no significance to whether or not it is going to work and that I have no control over. I instead just prayed and prayed everyday that the medicine was going to work. So far I am getting better. I have a long ways to go, but I am getting there slowly but surely....:) Thats better than nothing..;)
  4. redhummingbird

    redhummingbird New Member

    Thanks Sue and emmally. It always helps to know what others have experienced.

    I can't seem to figure out how to work the search function so I can't access all the valuable information that's on this site!

    I wish Dr. Montoya would publish his study. Does anyone know when that will happen?

    It seems like he's sitting on a goldmine of information and we need it.

    I'm trying not to worry about whether I'll be a responder and just go with whatever happens.

    I expected a lot of things to happen but not for not much to happen!

    But it sounds like from what you're saying emmally that it's too soon to expect anything?
    [This Message was Edited on 02/02/2009]
  5. ladybugmandy

    ladybugmandy Member

    yes! i would say too soon.....

    montoya is following patients as long as possible in hopes that they will respond even after being taken off the drug.

    k. loomis told me the study will make it easier for people to get antivirals for CFS so probably it will be somewhat positive.

    i wish he would hurry too!