Valcyte user

Discussion in 'Fibromyalgia Main Forum' started by gasolo, Mar 1, 2007.

  1. gasolo

    gasolo New Member

    I'm a 54 year old male who developed CSF four years ago following a viral illness. Like many of you on this board I also have found very little help from the medical community. After reading the published article from Dr. Montoya concerning his preliminary findings on Valcyte I decided to try this on myself. My IgG's for HHV-6 and EBV VCA were very high.

    Before starting the Valcyte I spoke to a friend who is a infectious disease specialist. He has treated many of his HIV patents with this drug. He feels this is a relatively safe drug as long as you monitor your cbc. The major problem with the drug is bone marrow suppression which is reversible when you discontinue the medication.

    I also spoke with one of the authors of Montoya's study who confirmed the safety of the drug among the 25 patients. He also mentioned that 3 of the patients were physicians. He is very excited about the results of the study so far. He did make a very interesting comment " I don't want to sound to excited because there are too many people who want us to fail".

    This is the end of my third week on Valcyte. I take 900mg twice daily. I will decrease this dose to 900mg once daily for another 5 months. From day one to day twelve my symptoms of CFS worsened with fatigue and brain fog predominating. Day thirteen to day eighteen I started herxing. I developed chills, teeth sensitivity, shortness of breath, severe fatigue, headaches and skin sensitivity. The past three day have shown a slight but real improvement of my symptoms.

    My cbc has shown a normal white blood cell count and has stayed stable until recently. My last wbc was still within the normal range but has decreased approximately 25%. My absolute lymphocyte count went from 2.1 to 1.7. Most interesting is my moncyte count. It went from .5 to .1 during the herxing reaction. This appears to be consistent with one of the study patients whose differential count was obtained during the herxing.

    hopefully my story will add to the general fund of knowledge for those who are considering going down this path.

    Gary














    [This Message was Edited on 03/02/2007]
  2. foxglove9922

    foxglove9922 New Member

    Thanks so much for the info on Valcyte. Many of here are planning on or have taken that route. Your post is very informative, please DO keep us updated.

    BTW, do you suffer from CFS? What criteria did your doc use to determine that you should go on the Valcyte? ie. high titers EBV? HHV6? CMV?

    Were you cleared of bacterial infections, Lyme, mycoplasma, etc. before you started?

    Again, thank you for this valuable information, it seems to correlate to what others here are experiencing and sense I haven't seem you here before, WELCOME.

    Best wishes that you will soon see the light at the end of the tunnel.

    Foxglove
  3. Perrier

    Perrier New Member

    Thank you Gary; we are about to do the tests for HHB6 and EBV for my daughter; please let us know what shape you were in before you started the treatment. I have been told that the drug is rough and so the person needs to be in relatively strong state; my daughter is bedridden at this point. I am new to this board and utterly distress to see my daughter in this misery. She became ill in 2002 after a flu, and then sort of crawled out, this took four years, but she was never well, and now she is in the pits of hell again. Please outline any recommendation you may have.
  4. gasolo

    gasolo New Member

    I took antibiotics on multiple occasions without obvious benefit. Montoya's study seemed like the most optimistic and likely to succeed. Since I fit into the category of responders, it seemed like a reasonable choice. I looked at the risk/benefit ratio and for me it seemed heavily favored towards a trial of Valcyte.

    Perrier

    When I started Valcyte, I wasn't quite as ill as your daughter sounds although I have been on multiple occasions. I tend to agree with the post on this thread by stovetop. The level of activity in the Montoya's study by the participants was between 5-25%. I would think this represents the more severely affected.

    best wishes for your daughter and hope there will be an answer for her problem in the near future'

    Gary

    [This Message was Edited on 03/02/2007]
  5. Slayadragon

    Slayadragon New Member

    I am so glad that you found your way to the board!

    It sounds like your experience thus far is going exactly as expected, which hopefully is a good sign that you will do well on the drug.

    Please continue to share your experiences with us when you are up to it.

    This obviously is a rough journey, but thus far it sounds like people are finding it worth it. I am keeping my fingers crossed for myself and for all of us.

    Best, Lisa

  6. foxglove9922

    foxglove9922 New Member

    Gary,

    When you're up to it, please do keep us posted on your progress.

    Bumping for others to see.

    Foxglove
  7. ask2266

    ask2266 Member

    Thanks, Gary!

    Keep us posted. :)
  8. Slayadragon

    Slayadragon New Member

    How are you doing?

    Best, Lisa

  9. foxglove9922

    foxglove9922 New Member

    Gary,

    Please do keep us updated on your progress when you're well enough.

    Wishing you the best,

    Foxglove
  10. gasolo

    gasolo New Member

    Thank you all for your kind well wishes. I've taken 21 days of 1800mg of valcyte and I'm on my forth day of 900mg a day. During weeks three and four my symptoms have worsened. Increased episodes of chills and fever (subjective), sever fatigue, headache, brain fog and shortness of breath. Most of the time I'm at bed rest. Fortunately I have a very supportive wife and children who tend to my physical and emotional needs. My wbc and platelet count have been in the normal range. This must be a herxing reaction since the degree of severity is substantially more than what I'v experienced since the beginning of my disease.

    Gary

  11. Slayadragon

    Slayadragon New Member

    It sounds like you're doing exactly as expected, then.

    This obviously is a really tough time for you, but based on a lot of other people's experiences it seems like it well might be worth it in the long run.

    I'm glad you have a good support network anyway.

    Best, Lisa

  12. lanya

    lanya New Member

    hi gasolo,

    thanks for sharing your story. can you tell us, when you have the strength, what your condition was when you started valcyte? i too am interested in how strong one has to be to brave this drug, and how bad/long the herx is likely to be.

    keep well and best wishes for your progress,
    lanya
  13. redtex

    redtex New Member

    what tests are run? what virus's are they looking for? what are the levels? i ask these questions because i am told that all people carry these virus's. thanks
  14. gasolo

    gasolo New Member

    I'm not sure how to rank the severity of cfs. From a functional point of view I would guess I was functioning at 20-25% of my pre-morbid state.

    I'm not aware of any study that specifically addresses the issue of severity of illness and timing of when to consider using Valcyte. It appears in Montoya's study, most of the patients were between 10-25% of their previous functional status.

    Concerning the magnitude of herxing reaction. I have remained on mostly bed rest for the past two weeks. I would say my present functional status is approximately 5-10%. This definitely knocked me for a loop. Today I feel better and hopefully have turned the corner.

    Hopefully this answers your questions,
    Gary

  15. gasolo

    gasolo New Member

    The use of Valcyte is approved by the FDA in the treatment CMV retinitis and its prevention in solid organ transplant patients. Montoya has used Valcyte in a subset of cfs patients who have high titers of HHV-6 and EBV IGg antibodies. This is considered a off label use of the drug. He is presently enrolling a larger group of patients in a new clinical trial. Hopefully this study will answer many of our questions.

    I'm not aware if fibro is being treated with this drug.

    Best wishes
    Gary
  16. lanya

    lanya New Member

    yes, this answers my question. i'm a 5-year sufferer in pretty good shape -- still work full time, though with difficulty. i'm probably at 60% of my pre-illness level.

    but my ebv and hhv6 titers are high, and valcyte seems worth a try, even though i may be incapacitated for a bit. just trying to figure out what to expect....

    best wishes,
    lanya

  17. foxglove9922

    foxglove9922 New Member

    Thank you ever so much Gary for taking the time to keep us updated on your progress with Valcyte considering the severity of herxing you are experiencing.

    I am on track to start Valcyte on 5/1 and sure do appreciate all those who come here to share their stories for those of us waiting in the wings.

    Best wishes Gary that you are finally on the the upslide!

    Foxglove