Need help w/ Valcyte.. I am so confused

Discussion in 'Fibromyalgia Main Forum' started by melissaz, Feb 13, 2007.

  1. melissaz

    melissaz New Member

    I just joined this forum a few days ago, and have to say, all of the information is very overwhelming!!

    Had a severe case of mono in my teens, and 15 years later, EBV reactivated. Of course, this lead to CFS!! I have been dealing with the CFS for over two years now, and while my physician has been very patient, he has not been able to offer any treatments, except treat the symptoms.

    I am very interested in Valcyte. It seems as if everyone on the forum is seeing the same five doctors. Can any physican prescribe this treatment? Also, does anyone know if insurance covers this?

    Any suggestions/advice is extremely welcome!!

  2. jaltair

    jaltair New Member

    Any physician can prescribe this medicine; however, insurance may not cover the cost if the drug isn't used for an "approved" type of treatment. In March 2001, it was approved for treatment of cytomegalovirus virus (CMV)in people with HIV infection. Then, in 2003, it was approved for the prevention of CMV disease in high-risk kidney, kidney-pancreas and heart transplant patients. It's quite expensive, running as high as $1,946.48 per month.

    There have been recent trials showing that it is effective with people who had flu-like symptoms prior to diagnosis of CFS. I don't think that the FDA has approved it for use as treatment for CFS, however. Until it is approved, most likely insurance won't pay.

    I'm not sure how those on this Board are getting it for CFS treatment. Perhaps they could elaborate on this?

    I do know that the side effects of this drug can be really bad, and most doctors will only prescribe if it's approved and if the benefits outweigh risks.
  3. melissaz

    melissaz New Member

    Thanks for your help!!!! I think the treatment last at least 6 months, so that would be around $12,000....more debt is all I need! If I were 100% positive that this would be the miracle for me, I would have to say it would be worth it. Of course, there are no guarantees! Thanks for ellaborating.

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