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Lessons from ME/CFS: Finding Meaning in the Suffering
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Third day on Valcyte. So far so good.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by vamah, Feb 24, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Wow - I'm in the UK so unless I can get it on the NHS, I'll have to find the money myself. :cry:
  2. SOC

    SOC Moderator and Senior Member

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    That's a lot cheaper than I remember. I hope you're right. :D
  3. SOC

    SOC Moderator and Senior Member

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    Remember to have your doctor put "chronic HHV-6 (or CMV) infection" as the reason for the med, not ANYTHING about ME/CFS in there. ;)

    If you can get some appropriate immune tests done and they show immune deficiency, you should be okay. Immune deficiency plus very high HHV-6 or CMV titres is certainly a reason to get Valcyte. They give it to other people with immune deficiencies (transplant patients, HIV patients) and high titres, so why not you? Yeah, I know this is the NHS, but still....
    heapsreal and Sasha like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    there are generics, apparently India have ignored the patent on valcyte so do make generics, this company http://www.universaldrugstore.com/medications/Valcyte+ sells the valcyte generic 100 tabs for $1050 which is the cheapest i have been able to find. hope this helps. this company requires scripts etc and initially identification proof etc too.All this can be a hassle at first but once through all the initial BS they are ok to deal with.
  5. Sasha

    Sasha Fine, thank you

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    Is there any issue over whether the drugs are genuine?
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I personally havent bought valcyte from them but buy my neurontin through them and its a med that u feel working from the first dose and seems just the same as neurontin i have got locally only local stuff cost twice as much. Maybe email them and find out where they get their valcyte, it should be made in india if its a genuine genric, could be other countries make genric valcyte by now too. have to google around i guess.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    just read produced in india and shipped from singapore and its cipla brand which is the company that makes the generic, so sounds good from that.
    Sasha likes this.
  8. Ruthie24

    Ruthie24 Senior Member

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    Dr. K was telling me that Valcyte was supposed to be going generic in the "near future" but didn't specify exactly when that would be.
    Sasha and heapsreal like this.
  9. Jacque

    Jacque Senior Member

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    I guess this is a rich persons disease...and I am not that... Have spent every dime on this jun k... To qualify for the eligibility of the patient assistance you cannot make over 100K so I should qualify... And I canceled my med insurance bc it was draining me and not paying for a damn thing.... I couldn't pay for my doctors and medical insurance too...how insane is that... I am just not able to work any more... so im stuck. I cannot believe how much you paid...YIKES....but at least it worked!! yay..... I am prayyying that the Valcytye helps with this intense spine/body pain...makin me nutty..
    Did you get sicker at first on the Valcyte? Thx Jac
  10. Jacque

    Jacque Senior Member

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    Oh God NO...please tell me I am not gonna get MORE headaches....ahhhhhh I have so many migraines as it is... Hope you make it through!! How long have you been on it now?
  11. vamah

    vamah Senior Member

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    2 weeks today. I was pretty sick a few days after I started for about a week, but been getting better since then. As you can imagine, it is difficult to tell what is from the valcyte and what is just ME/CFS flare at this point. Guess that means I am close to back to my baseline, which is good. Hope you are able to qualify for assistance. I feel you on having to pay for doctors yourself because your insurance sucks. What virus(es) do you test positive for?
    Jacque and heapsreal like this.
  12. SOC

    SOC Moderator and Senior Member

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    If it's any consolation, my daughter's migraines, which started with her ME/CFS, stopped after her Valcyte treatment. She had HHV-6, so maybe a neurological infection was causing the migraines...? She did the start slow and increase protocol that Dr Lerner, and now Dr Montoya uses, so she didn't get more headaches in the beginning.
    Jacque likes this.
  13. Jacque

    Jacque Senior Member

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    l
    Tested positive for HHV6 EBV HSV1 n 2 with way low NK cells.... Just like all of you... Talked to Dr. K today about the Famvir vs the Valcyte and he said Famvir would run me about $900 a month ... and he said the Valcyte is the more powerful of the two...the sledgehammer. So applying for patient assistance today.
    Marianarchy and heapsreal like this.
  14. Marianarchy

    Marianarchy

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    The bad news about Valcyte going generic is that Genetech won't offer Patient Assistance for Valcyte any longer. Famciclovir, the generic form of Famvir is still VERY expensive for those of us who are uninsured.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    do you know the price of the generic valcyte when it comes out in the states?
    As for famvir i recently found an online pharmacy selling 500mg x90 for just over $200, i dont have any experience with this company though, but is the best price i have seen so far.
    Marianarchy likes this.
  16. Scavo86

    Scavo86 Senior Member

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    When does Valcyte go generic?
  17. Marianarchy

    Marianarchy

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    The Valcyte patent is set to expire in 2015. This article talks about a generic version being available in 2013 before the patent expires. I'm confused...
    heapsreal likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    it will be interesting to see how much cheaper it will be. I think something else which will drop the price of valcyte is when cmx001 becomes available. AFter cheap valcyte i would like to see big pharma bring out a new cheap sleep med that works with no tolerance problems, that wont happen soon, lol.
  19. Scavo86

    Scavo86 Senior Member

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    Thanks for the info re: Valycte generic. At least it's sooner rather than later, regardless of 2013 or 2015. Maybe there is some hope after all for us in the UK.
  20. Jacque

    Jacque Senior Member

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    I was on the phone today with Genentech and applying for the patient asst program so I guess it is still very much available ... altho no one can tell me what the stats of cancer were in the animals... why is that???

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