New roadblock in my struggle to get on antivirals

Discussion in 'Fibromyalgia Main Forum' started by 28years, Jun 23, 2008.

  1. 28years

    28years New Member

    For the past several weeks, I've been jumping through a lot of hoops trying to get Valtrex and Valcyte covered by the drug companies.

    Today I made THE call to GSK. I had all my paperwork, and my scripts and everything. During that phone call they will tell you whether or not you have been accepted into the program (bridges to access). Even better, you can get your script filled that day, if you're accepted.

    I was accepted. If I wasn't so brain fogged and exhausted I would've jumped for joy. Instead I got a case manager from the County who's been helping me with this to fill my prescription.

    She brought it to the pharmacy, and lo and behold it turns out GSK won't cover the full amount my script!!!!!!!!!!

    they will only cover up to 50, 1mg pills a month. Dr. Lerner prescribed 1mg 4x's a day. That's 120 pills a month.

    now I have to figure out what to do all over again.

    My caseworker did call GSK, and they said that was all they would cover for anyone with any illness that was accepted into their program.

    At this point I'm just so stunned, and disappointed I don't know what to think. For a few brief minutes there, I thought I had actually done it, actually gotten antivirals that could significantly change my life. Then boom -- the other shoe dropped.

    I was wondering if other people are taking similar doses of Valtrex. and is that high amount of Valtrex covered by insurance companies.

    I may look into private insurance, but I'm afraid if I get out of my state-sponsored program and into a private insurance company that they will deny me coverage for Valcyte and Valtrex. Of course I would call them first to find out if they covered it. But I won't actually believe that it's covered until I get the medication.

    so tonight I'm tired and discouraged. I worked so hard already just to get this far. For a brief moment, I thought I would actually be starting the Valtrex today. considering that my heart has been given me a lot of trouble lately, and my ability to walk is pretty much a disaster -- I was really looking forward to trying the treatment. Now I feel like I'm back at square one.

    about the Valcyte. That is a mail-in form for Rouche. I have that one all set to mail in, but I need them both covered in order to afford the treatment.

    ( Dr. Lerner wants me to start with Valtrex for four to six weeks before starting the Valcyte. I think this is because my EBV is very much more elevated than my HHV-6.)

  2. marti_zavala

    marti_zavala Member

    I would offer my suggestion again to try acyclovir but you seem dead set to have Valtrex and Valcyte.

    Personally, I wouldn't touch Valctye with a ten foot pole.

    I have gotten benefit with acyclovir - 1000mg per day right now.

    Could you supplement the free 50 Valtrex with Acyclovir (it is $4 for 200mg per day at WalMart - you don't need insurance).

    Just a thought,
  3. 28years

    28years New Member

    acyclovir is definetly on my list of back up ideas. But I went through a lot of trouble to see Dr. Lerner and I'd like to go with his treatment, esp. since he has so many years experience with antivirals.

    But it's good to be reminded about the acyclovir.
  4. basketmom

    basketmom New Member

    I have insurance but they will only cover 100 of the 1 gram Valtrex per month. Dr. Lerner has prescribed 2 g 4X per day. They are covering all the Valcyte at this point.
  5. deliarose

    deliarose New Member

    2 grams 4x a day. Wow, that's a whopping dose.. by conventional standards.

    Is that a loading dose or does he keep patients on that kind of dose long-term?

  6. marti_zavala

    marti_zavala Member

    I should research this but I believe there is a difference between Valtrex and acyclovir. Personally, I prefer Valtrex but my insurance won't cover it except for 1 week at time now and then. I have tried it twice and really liked it. But the acyclovir is really the same too except that when I go off(rarely), the sore throat, flu feeling comes back faster than when I get off Valtrex.

    The difference that I have been told by a Doctor but may be wrong - Valtrex stops the viral replication more efficiently than acyclovir. Again, I do not know if that is so, but I may try to research that.

    I do understand the "herx" effect with various medications but I don't believe that when the detrimental effects last as long as you take it, that that is good for your body. Valcyte sounds like the Ampligen of previous years.

    Can someone explain to me why Valcyte is prescribed? Is it still experimental? Is it a repackaged Ampligen? I do understand wanting to follow Dr. Lerner's protocol. And I do sympathize with having to jump through hoops and still not accomplish the goal. It is exhausting.

    Open to learning new things but Valcyte sounds like light chemo.

    Anyway, I hope you can get the anti-virals you need and that someone can help you traverse the hoops.

    [This Message was Edited on 06/24/2008]
  7. ladybugmandy

    ladybugmandy Member

    valcyte is prescribed for suspected active HHV 6 or CMV infection. it is not a repackaged ampligen but ampligen also acts on HHV 6.

    valcyte probably acts on EBV as well.

  8. aftermath

    aftermath New Member

    Speaking of Ampligen, I am very curious as to if it will finally get approved this year.

    It actually went to the FDA for approval late last year.
  9. ladybugmandy

    ladybugmandy Member

    i am not too excited about ampligen...people seem to have to be on it for so long if they have been sick a long time....not too different from the other antivirals.

    we're talking years!