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Valcyte experience / side effects??

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by copi2k, Dec 13, 2012.

  1. copi2k

    copi2k

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    hi there,

    i was diagnosed with a highly positive CMV. Since 4 years I'am sick, Lyme Disease. I was treated 3 years with different antibiotic protocols. This year, there was no more improvement, thats why i was tested for herpes 1-6 through my LLMD. Like i said, the CMV was highly positive (active).

    I stared Valcyte 1 week ago. I worked up from 1x450mg a day to 3x 450mg a day. But since tuesday, I'm feeling really "sick". Im very fatigued, sleeping a lot, have some clear moments the day through, but overall feeling just like have the "flu".
    Besides that, my eyes feeling like they would be inflamed (conjunctivitis). Im about to go to an eye doc tomorrow to check whats wrong there..

    I would like to hear about your experience with the side effects of valcyte??!

    best regards
    Stretched likes this.
  2. Ema

    Ema Senior Member

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    I also have highly positive CMV but have not yet started Valcyte. I've been on Famvir for about 9 months.

    You should do a search for Valcyte (do you know how to do this?) on PR. There are several threads including one of mine from not long ago where we discussed Valcyte and the side effects and dosing. Hopefully you will also get some feedback from the members that have taken Valcyte.

    That said, I think you may have ramped up too quickly. Can you talk to your doctor about starting more slowly? Is your doctor monitoring you? I think it is important to have regular bloodwork to check liver and kidney function while on Valcyte. At least every other week at first is necessary.

    Other than that, it does seem like the symptoms you describe are at least somewhat common when starting up with a high viral level. I think for many this does improve with time.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes, one feels like crap when they start, i started several times as i just felt too sick on it until it became bearable. I started with 1 tab and increased it to 2 after several months, i was also taking famvir with it. I took valcyte at night as it was easier to sleep through the side effects as my sleep meds would help me.
    vli likes this.
  4. RUkiddingME

    RUkiddingME Senior Member

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    I finally have my prescription for Valcyte 2x 450 mg twice a day for three weeks and 2x 450 mg a day for six months. I will start after Christmas although I'm a bit nervous because my white blood cell count is already in the very low range of normal. I hope I get a chance to try it without my WBC falling in the danger zone and having to stop the drug. Will post my experienc here if I tolerate the drug. Good luck!!
    vli likes this.
  5. Butydoc

    Butydoc

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    I was on Valcyte 5 years ago starting with the dosage of 1800 mg a day for three weeks than 900 mg for 6 mo. I didn't tolerate that dosage very well and was more ill than before the valcyte. I recovered after stopping the Valcyte and continued to improve to better than prevalcyte over the ensuing 6 months.

    I've recently started another round of valcyte because of worsening of my symptoms. I see Dr. Montoya at Stanford as my treating physician. He no longer starts patient at such a high dose nor ramps up the medication so quickly. He claims that a smaller starting dose followed by slow incremental increases has the same benefit as before without the negative consequences.

    I started on 1/2 pill (225 mg) for one month then increased it to 1 pill(450mg). I plan to increase this to 1 1/2 pills(675 mg) in another month until I reach 900 mg. I've tolerated this schedule much better than before. He also plans to keep me on the Valcyte for 1-3 years.

    Best regards,
    Gary
  6. PhoenixBurger

    PhoenixBurger Senior Member

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    What is required to get this stuff prescribed usually? Every doctor I have spoken to outright refuses to prescribe it just for high CMV (IGM) ....
  7. m1she11e

    m1she11e Senior Member

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    My Doctor is in contact with Montoya and told me about the much lower dosing and starting with only 1/2 a pill. When I mentioned it on here several people warned against never ever breaking the pill in half. There is a warning I guess on the bottle but my Doctor said it was so others in certain risk groups didnt come in contact with it. People seem to think no one should EVER come in contact with the pill for fear of something awful. (More awful than CFS...????) Im glad you confirmed Montoya is indeed suggesting 1/2 a pill for some to start. Good luck with this dosing. Im curious to see how you do.

    Good luck!
    Michelle
    heapsreal likes this.
  8. copi2k

    copi2k

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    ok, today i went to an eye doc, everything ok, but valcyte seems to make my eyes a little bit dry, thats why they feel a little bit "inflamed"

    today i didnt take a valcyte, break, i will start tomorrow again with 1 a day and will increase within 5 days to 2 pills


    :)
  9. Stretched

    Stretched

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    Hello fellow Valcyters,

    I finally got underway with Valcyte (V) ~ 10 days ago. The dosage is 450m x 2/day
    (21 days), then 1/day for6 mos; all w/weekly blood work. Then reassess.

    The first 2 days were not unlike I had food poisioning: weak, nauseous, bloating, stomach burn, et al. Third day was an upper (not manic). The doc agreed my 'up' was probably a placebo effect which we both agreed we'll take! Then last week I settled back to baseline (~7/10, 10=supine).

    However, I crashed hard today following 3-4 hours of computer work. All of a sudden
    I felt like the first 2 days - flaring to a '9'...

    This follows a year's efforts with a new doc (for me). She's an MD in Integrative Medicine and had withheld the protocol until after I had nearly drowned her (and me) with research.
    She has one other patient on it who is HHV6 pos, who has had nair a problem, now in her second month; and one other patient (also of Dr John Chia) cured' excepting a couple of flares a year.

    I kept on top of the research, plus I kept thinking I could 'mind control' it away. Early research was all over the map so I hobbled along and treated symptoms until recently. Frankly, I was furthered inspired to act by other favorable accounts in this forum.

    After many docs and 10x tests CMV was the only 'marker' that ever appeared - active in 1991, but then 'untreatable.' Having learned thatCMV is HHV5, in my case I came to the conclusion CMV is the culprit behind my ME. I want to give V a fair try. So, 2 more
    pills at dinner and off to bed.

    I'm about out of gas, so to speak and researched to ditz. Any thoughts?
  10. Stretched

    Stretched

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    I may have accidently sent my reply into the great ether...
    IAE, please see my post early am today. I had the same problem for years, in addition to lack of published
    success stories. I wish I could send you my tome of specific research...

    You might want to amass some backup and try a doc who treats these nefarious illness, e.g. HHV's, et al.
    Wikipedia has some good links if you start under 'Virus' and use the hot links to get to CMV and Valcyte. There
    are also good links in the footnotes, some studies even refer to Montoya's work and protocols. Print them out
    and underline your preferences, notebook them and find a new doc.

    I found the Integrative Medicine MD's seem to be broader in their training and more understanding. Also, they are hard to find (and you sure don't want some non-md variant). You will likely find one who understands your dilemma.
    Be prepared to let him/her do their own tests to satisfy and rule out other possibilities. Then you'll be in a position
    to get the script you want. Also, be forewarned that the discussed Valcyte protocol costs a lot. My insurance
    got the first round but made sure to include an otherwise invoice of $10,000!

    I hope this gives you some ideas. It shouldn't take too long to hit,-) Good luck.
  11. PhoenixBurger

    PhoenixBurger Senior Member

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    Did you have any concerns about the black box warning about cancer?
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Cfs is a risk factor already for cancer, so I think for us treating these viruses lowers our overall cancer risk, I hope so anyway. Also just having a low nk function like many of us is a cancer risk factor as well. The benefit to risk factor i think is in our favour???
    SOC likes this.
  13. Stretched

    Stretched

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    Not really. I'm somewhat fatalistic on cancer; it's like I've had this illness so long that to worry about 'C' while trying to get
    better would inhibit my all-out efforts.

    I've made so many changes already (diet, exercise, socializing, work, etc.) that I'll just defer and play that card if and when it hits.
    Aren't the statistics 1 in 4 for cancer?=-&
    ggingues likes this.

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