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Withdrawal / Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Stretched, Jan 14, 2013.

  1. Stretched

    Stretched

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    I stopped this med as of Friday, Jan 11, 2013, after a month's 'endurance' trial, to say the least.
    (Started 12/7/12, at 900 mg twice a day. At 10 days had to drop to half that dose...

    This weekend was unpleasant but today it feels like the cure was worse than the illness, and stopping
    the 'cure' is worse!

    I've read a lot of literature on Valcyte, which is formidable and includes all possible mfr's CYA possibilities.
    My doc is out of town this week so I'm equivocating whether to restart Val or tough it out. (It feels like a narcotic
    Pill or alcohol withdrawal syndrome - ache all over and can't think clearly, etc.)

    I would appreciate any experiences from anyone else who tried it and then gave up the ghost.

    Thanks, and great forum from a long time PWME/CFS

    Fwiw, over the years of dealing with ME the only thing that stood out in tests was a then active CMV in 1991,
    but no drugs - so I've treated symptoms and avoided the unproven, but took a SWAG at revisiting the old
    CMV in hopes of winning the lottery=-(
     
  2. SOC

    SOC Senior Member

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    Starting at 900mg twice a day may be part of your problem. The docs who know the most about Valcyte are using a more "start low, go slow" approach. Your symptoms don't sound like withdrawl -- they sound like those described by people who started too high too soon. The most I ever took was 1350mg and I worked up to that.

    Valcyte can have some nasty side effects. Many, not all, people who take it have a rough period where they feel anywhere from somewhat worse to incredibly awful. There's a lot of patient experience with Valcyte recorded here at PR. You might want to search for it to get some additional insight.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Stretched

    Did you mean that you want your thread title changed? If so, how do you want it to read?

    Sushi
     
  4. RUkiddingME

    RUkiddingME Senior Member

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    That's aweful, I'm so sorry you are going through that. I read it can be absolute hell. I'm on day 10 at 1800 mg a day and so far it's like eating candy but I know it can hit around week 2 and be weeks of torture. I hope I can get through it. Were your labs normal the first month? From the Montoya study the drop in monocyte was associated with the patients feeling much worse. Good luck if you decide to go back on.
     
  5. Sparrow

    Sparrow Senior Member

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    Yikes! Much sympathy.

    Maybe things have changed since I last looked into it, but that sounds like a HUGE dose to start off with. From what I've heard, some of the top doctors using Valcyte are even doing half pills now to start.

    Obviously, I'm not a doctor and can't give you any actual medical advice, but if I was having really bad withdrawal symptoms, I would probably try taking a little and tapering it off more gradually. It sounds like your poor body has been through a bit of a shock already, so I'd be trying to minimize any extra strain.

    Maybe once you're clear again for a while, it would be worth another trial at a much lower starting dose. It might still be able to help you, without doing so much damage.
     
    RUkiddingME likes this.
  6. Butydoc

    Butydoc President

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    Sorry you're having such a difficult time on Valcyte.
    I started on Valcyte under Dr. Jose Montoya in 2007. The dosage was 1800 mg per day for three weeks followed by 900 mg for 7 months. I was more sick than before Valcyte for the entire 7 months. After stopping the drug, I improved enough to resume work at a high level. I recently had a recurrence of my most severe symptoms and started another course of Valcyte. This time Dr. Montoya claims he has learned a lot over these past 5 year. He no longer believes a loading dose ( 1800 mg) is necessary and in fact may be harmful. He started me on 225 mg valcyte daily for one month then increased the dose by the same amount monthly. I'm presently on 675 mg daily without the horrible side effects I experienced before. I'm starting to see improvement although minor. Dr Montoya feels I need to be treated from 1 -3 years with this drug. He has also noticed from his patient population that the longer one stays on valcyte the greater the degree of improvement. Hopefully this is helpful for you.

    Gary
     
    Sasha, vli, Sparrow and 2 others like this.
  7. RUkiddingME

    RUkiddingME Senior Member

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    Thanks Gary that is so interesting! I've read a few other posts on here about Dr. Montoya not using the high dosing anymore. What surprises me is that I see one of Dr. Montoya's colleagues and he is still prescribing the loading dose. It's sad that there is no actual protocol in place and every doctor prescribes differently. I'm on the 1900 mg a day and I only weigh 125 when soaking wet! lol I hope I get a fair chance at this drug. How long were you able to have a life before the recurrence of your symptoms?
     
  8. Butydoc

    Butydoc President

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    I was probable operating at a 70 to 80 percent level until 2 years ago when I slowly worsened causing me to retire in September. According to Montoya, he has a 100 percent success rate with people who responded to valcyte then experenced an exacerbation.

    Gary
     
  9. RUkiddingME

    RUkiddingME Senior Member

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    That's a good little stretch but must have felt like a bit of a tease. Must be devastating to crash after regaining some quality of life. I hope you can regain that level!!! With all of us trying this stuff, I hope they will figure out how long and how much to take it to avoid a relapse. I am on full disability so I am able to take it easy during treatment and until I get better enough to work which I won't rush into even though I miss it. Thanks so much for sharing your experience and good luck!
     
  10. Stretched

    Stretched

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    Thank you for your interests. However, I'm somewhat bemused about the purpose of your email - to support what I've already requested??? I thought my intentions for posting were clearly obvious! Indeed, things get wet outside when it rains!

    I see you have an enormous amount of posts; are you an accredited authority on ME/CFS? If you have direct experience with abrupt withdrawal from Valcyte, as I requested, it would be helpful to learn of that experience. Otherwise, again, thank you for your interests.
     
  11. Stretched

    Stretched

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    No, sorry. I did not intend to start a blog, only a thread. 'was not/am not thinking clearly at regular baseline =-&
     
  12. Stretched

    Stretched

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  13. Stretched

    Stretched

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    Thank you for the excellent recap Gary. It's comforting to learn the real skinny from kindred spirits who have
    actually experienced withdrawal.

    FWIW, I finally had to something to get relief; guessed w/d needed titrating. So I took a 450 mg dosage (after 2.5 days off) and went to bed. 'Took another 450 mg today (12 hours later) and was somewhat better until late afternoon - then Bam! the same w/d thing hit. HOWEVER, as of this hour my system has settled down but not to normal baseline.

    I'll take one more tonight then maybe one every other day for a week or so. I do want to give it a fair chance and not
    bail after getting some momentum. Based on your experience does this seem like a plausible regimen or would you modify? Thanks again.
     
  14. Butydoc

    Butydoc President

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  15. Butydoc

    Butydoc President

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    I would probably start out with 1/2 pill (225 mg) daily until you have been at baseline for at least one week before increasing your dose. This regimen seems to work well with me.

    Gary
     
  16. SOC

    SOC Senior Member

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    Wow. :rolleyes: Do you know about the Ignore function? You might want to put me on the list of People You Ignore if I bother you that much. Sheesh.
     
    Yocheved and heapsreal like this.
  17. Sparrow

    Sparrow Senior Member

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    I imagine that SOC's intent was similar to the rest of us who responded - to share our experiences and information, in case it was useful to you. SOC herself has been through Valcyte treatment under the care of one of the leading researchers in that area, so she may have something valuable to contribute to the discussion here. I think targeting WHY you're feeling like crap, or offering possible solutions seems like something useful to have in this thread, if not for yourself then for others who come across it because they're having similar problems.
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Stretched,

    SOC is one of the members with the most experience with Valcyte and who was treated by one of the doctors with the most knowledge of this medication. I am sure that this reply to your thread is a thoughtful attempt to try to help you unravel the cause of your distressing symptoms.

    The number of SOC's posts reflects personal patient knowledge of this illness and a commitment to share that knowledge with others. This is why we post here--to share knowledge and try to help each other.

    Sushi
     
    RUkiddingME, Ema, SOC and 3 others like this.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont think your personal experience with valcyte under dr lerners care, your daughters or your uncles experience with valcyte just doesnt seem to be enough to be of value to some. The ignore button sounds like a good option for some.
    I will say that i value your experience and appreciate you sharing your experience with others which has been valuable. Maybe my high post count devalues what i have just written too??

    cheers!!!
     
    RUkiddingME, Ema, SOC and 1 other person like this.
  20. vli

    vli

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    How sick are/were u if you don't mind my asking?
    So did you mean except for seven months in 2007, you had not taken any val. in the years since, until now?
     

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