Valcyte Side Effects - Need Help

Discussion in 'Fibromyalgia Main Forum' started by emmally, Feb 22, 2009.

  1. emmally

    emmally New Member

    Please respond by listing a summary of any and all side effects that you have had from Valcyte. I would appreciate it.I am trying with help to put together a list of symptoms that are caused by valctye during treatment for viruses. A list that once complete I can sum up into one article to post. Please if you had been treated with valcyte please list any and all side effects and impairments that it caused.
    [This Message was Edited on 02/27/2009]
  2. 28years

    28years New Member

    I will be starting Valcyte myself very soon.

    It would be great to have a list of the possible side effects to expect.
  3. emmally

    emmally New Member

  4. Smurfette17

    Smurfette17 New Member

    Kelly- thanks for posting those.

    "Agitated exhaustion" was so well-put. It is exactly how I've been feeling on Valcyte. Incredible fatigue, and yet the feeling that I've had 10 cups of coffee. Luckily, the last 2 days have been better and I'm also taking some Ativan which is helping to "turn down the volume".

    But... I am only on day 13, so I need wait and see the bigger picture.

  5. emmally

    emmally New Member

    I would appreciate any other posts that can descibe your side effects while on valcyte.

    I am doing ok, thanks for asking but today is a bad day. Been up since 7am for doc appt and feel so tired that I am physically naucious.
  6. stschn

    stschn New Member

    In truth the side effects of Valcyte were in a word "Hell" for 6 months. More importantly the results for me were more than worth it. Before this DD I was the managing partner in a business that did over a million $ a year (back when that was pretty big bucks. After this hit I couldn't even add a 6 numbers, I had trouble in remembering my name I could no longer read a book. I have have a great deal of cognitive recovery and I am so thankful for that. Of course I wanted more but I am thrilled with what I have. Keep you eyes on the big prize in my case it was more that worth it.
  7. emmally

    emmally New Member

    Please keep them coming if you have have been treated with valcyte. My goal is to get a short article put together to help explain the side effects of valcyte during treatment. Not jsut the general side effects of the drug but more specifically what occurs during valcyte treatment for viruses such as hhv6.
  8. ask2266

    ask2266 Member

    I've been on Valcyte for 2 months. I've had:

    (1) Aggitated exhaustion, shakiness

    (2) Only able to sleep 2 hours at a time on an Ambien CR/Lunesta and 2 mg clonozaopem

    (3) headaches

    (4) dilated pupils; sensitivity to light

    (5) depression, anxiety

    (6) nausea

    (7) fatigue--unable to get off couch--but unable to sleep.

    All of these I had suffered from before I started, but they all got incredibly worse. The depression was the worst I have ever had in my life. I wanted to die, and I was immobilized. It was the first time I had depression where I didn't want to get out of the bed, even though I was wide awake.

    I stopped taking the Valcyte for four days while on a trip after one month on it, and I felt better than I did before I started it and while taking it. I knew it was working, so I went back on it and have had a continuation of symptoms, but they are off and on now and not everyday. Some days are still very bad though.

    I plan to take it for at least 6-8 months to make sure I knock everything out.
  9. Smurfette17

    Smurfette17 New Member

    I'll gladly add to your list, but I've only been on it 2 weeks so I want to collect more data before posting so I can give you an accurate report :)
  10. emmally

    emmally New Member

  11. ask2266

    ask2266 Member

    Also, I would add:

    Basically whatever you're symptoms from the viruses are-- your CFS symptoms--- those symptoms will get worse on Valcyte. I never have gotten new symptoms on antivirals just a worsening of what I already have.

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