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Valcyte dangers

Discussion in 'General ME/CFS Discussion' started by saint, May 9, 2014.

  1. saint

    saint Senior Member

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    I was given a script for Valcyte for the viruses I'm fighting off - EBV, parvo (or rather, not fighting off) and went to download a coupon to save money. I read the following:
    WARNING: HEMATOLOGIC TOXICITY, CARCINOGENICITY, TERATOGENICITY, AND IMPAIRMENT OF FERTILITY

    • Clinical toxicity of Valcyte, which is metabolized to ganciclovir, includes granulocytopenia, anemia, and thrombocytopenia
    • In animal studies, ganciclovir was carcinogenic, teratogenic, and caused aspermatogenesis
    Scared me out of my wits. Already dealing with too much - don't need cancer on top of it. Has anyone used this or Famvir successfully? I wonder if it's safe in short-term, as it didn't specify.
  2. minkeygirl

    minkeygirl Senior Member

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    I haven't used Valcyte but there are plenty of people who do and Famvir and swear by it. One is @heapsreal.

    I'd use Famvir in a heart beat but right now I can't take any anti-vitals. They completely screw up my sleep.
    taniaaust1 and SDSue like this.
  3. vamah

    vamah Senior Member

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    I think the cancer risk is theoretical. You have to balance that against the risks of not fighting the virus. If you are not dealing with cmv or hhv6 there are other antivirals that may work but valcyte is the only oral antiviral effective against those.
    A higher risk is anemia and liver damage, so you should get bloodwork weekly when you start to watch for those things. I was on valcyte for over a year amd it brought my hhv6 titers down from extremely high to merely high.
    heapsreal, SOC and SDSue like this.
  4. SDSue

    SDSue Florida

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    For me, it all comes down to risk vs benefit. As a homebound individual, I have no life to speak of. I am willing to try just about anything that has shown to help others with similar physiology/pathology .

    That being said, I have a tough choice coming up - my kidneys are in tough shape but I have reactivated EBV (at the least - likely others, waiting for results). If antivirals can help me get to a level 5, is it worth it to have a few "good" years before the possible damage to my kidneys gets severe enough to impact me? Or do I sit back and wait for a "cure".

    I wish you the best in your dilemna.
    taniaaust1 and Kati like this.
  5. minkeygirl

    minkeygirl Senior Member

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    @SDSue I agree with you. I'm homebound and will also try pretty much anything. I can't be too incapacitated because I have no help but barring that I'm game.

    I haven't tried Valcyte because 1. I can't afford it. 2. Even if I could my doc won't rx it and 3. I can't get to a lab weekly for blood work.

    IMO if you have the opportunity to try something that could really help do it.
    SDSue likes this.
  6. SDSue

    SDSue Florida

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    I'm not sure if I will be offered Valcyte (don't know HH6 status), but I had no idea it requires weekly labs. What are they looking for with such frequent labs? Do all the antivirals require such caution and vigilance?
  7. minkeygirl

    minkeygirl Senior Member

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    I think with Valcyte, more than other antivirals you have to get monthly labs (mistype on my end) to make sure your kidneys are ok. I know with Acyclovir I had to get mine checked every 6 months. I"m not sure about Valtrex.

    I don't think that's an issue with Famvir. Someone else with more experience can chime in. Maybe @heapsreal
  8. SDSue

    SDSue Florida

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    This gives me hope, then. I guess the balance is effecacy vs kidney damage, and it sounds like there are some AV's with a safer profile.

    @heapsreal also has experience with immune modulators???
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Don't many viruses "lead" to cancer anyways? If I didn't have much of a life, don't really, and was near the end of my "life cycle", I don't think that would bother me. Your going to die of something!

    GG
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  10. SOC

    SOC Moderator and Senior Member

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    I have spent more than 2 years on Valcyte all told. I never had weekly blood tests. My doctors have always asked for blood tests every 4-6 weeks. The reason is to check for neutropenia and liver problems, both of which are potential side effects of Valcyte. Both are also reversible if caught in time, which is why the doc wants to test frequently. If your numbers start to deteriorate, the doc will reduce your dose or take you off Valcyte entirely and you will have come to no harm.

    Famvir and Valtrex do not require the same caution and vigilance, but they are also not nearly as effective for HHV6 and CMV. Valtrex is not very effective at all for them, in fact, although it's good for EBV, HSV, and varicella (chicken pox/shingles). Famvir is thought to have some effect for HHV6 and CMV, so some doctors prefer to try it before Valcyte because it's safer. The downside is that if it doesn't work for you (and the odds are pretty high of that) then you've wasted months on an ineffective med.
    NK17 and SDSue like this.
  11. SOC

    SOC Moderator and Senior Member

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    I just remembered -- Valtrex can cause kidney stones if you're not careful to drink lots of fluids, so a responsible doc will require routine urinalysis if you're on Valtrex.
    ukxmrv likes this.
  12. SDSue

    SDSue Florida

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    Thanks, @SOC!
  13. vamah

    vamah Senior Member

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    I should have been clearer. I got weekly labs for the first month, then every couple months once the doctor could feel comfortable that srrious side effects were unlikely. Apparently, if something bad is going to happen it will probably be very quickly, but potentially very bad.
    SOC likes this.
  14. Kati

    Kati Patient in training

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    I have started Valcyte in March.

    On my protocol, there is a 3 weeks long loading dose, where I needed weekly blood tests. Following that you start the maintenance dose and you are being put on monthly blood tests.

    My blood tests were totally fine. My dr finds that only the monocyte tend to drop. For most patients starting on this therapy you may get worse before getting better. In my experience, the cognition has been more difficult. Functionally I am more or less the same, so far that is. Just don't expect miracles. hope for better functioning. and better understanding of our disease in the meantime.

    Every drug therapy come with a risk. That said, most physicians will tell you about their experience about caring for patients taking that drug. One has to weigh the benefits vs the risks when undertaking such therapy (and considering the costs, ouch)

    i am very thankful for this opportunity for improvements in my health with Valcyte. Fingers crossed.
    NK17 and SOC like this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    All i can say is that vaclyte helped me alot, i used valcyte for about 18months. I stopped valcyte because i think i improved as much as i was going to on it. ANother reason was that my neutrophil count was dropping and probably causing chronic sinusitis. But my bloods were monitored regularly and when im neutrophils got to a point of being too low i stopped. Its taken a little while for my neutrophils to come up but they have to pre valcyte levels and sinuses have improved also.

    I think if u look up any med or maybe meds one is on now u will see a list of side effects as long as your arm. These are put out there to cover there arse if any possible issues arise and they can put the blame back on the patient as they new the risks involved.

    I had done famvir previously and this helped to a certain degree but valcyte got me just that bit further. Now off valcyte, if i have viral symptoms returning i do a course of famvir for 2-4 weeks. These short courses now work for me as i think the long initial duration i was on antivirals has lowered the infectious load. So hitting these viral symptoms early ie within the first 5 days and hitting them for 2-4 weeks seems to be doing the job. Again short courses started early for herpes infections can stop them in their tracks eg would be something like shingles

    I will also say that using immune mods has also helped me post valcyte and i have found that the need for these short courses of famvir are becoming less frequent. But immune mods immunovir and cycloferon which im alternating month about are helping improve my immune function and keeping these infections down.
    SOC and SDSue like this.
  16. saint

    saint Senior Member

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    A lot to take in. Dr. didn't tell me I needed my liver or kidneys tested. I am concerned because I'm also on flucozanole - which taxes the liver. I drink lemon water and take choline Radio recommends for LRT, so read that is supposed to help liver also. I think lecithin granules supposed to help - as long as non-GMO. Had bad reaction to curcumin, but may try again.

    I did come across info awhile back that cancer can be caused by viruses - so I guess that has to be considered. I, too am very incapacitated - the worry about the drugs and money add to the load of this disorder as much as anything. My cousin who has fibro went into facility where all these foreigners were getting everything paid for - and she can't even afford her Cymbalta.

    And my husband being worked into the ground & I can't get any assistance anywhere; and I've tried. Humanely, wouldn't want to turn anyone down needing healthcare, but what about those of us who need a hand up who have paid taxes here for years? They just keep sucking the life out of us.

    Just heard on radio talk show about million dollar vacations gov't workers getting that we're paying for, and I can't even get adequate health care. (Sorry - anger gets to me about how skewed everything is. Just like the Titanic - they locked all the poorer people below, and only the rich got access to life boats) Keeping my fingers crossed on how much Valcyte prescription is. My husband didn't want to put out more money; already strapped & I can't work).

    Started famvir per Dr. P. protocol & flat on back, so must be doing something. Then saw fibro doc who said Valcyte much better.

    Dr. P said these viruses kill nerves (hope I recall it correctly) in the gallbladder & I think elsewhere -usually gallbladder has to come out. I couldn't believe it. I've been telling docs for years I've been getting a pain on my right side and they ignored me. Don't want gallbladder out, & doc said maybe isn't damaged too much. So apparently these viruses are nothing to fool around with.

    Just got phone call: Valcyte $2,000 - they're checking to see if we can use Valcyte discount card; you can't afford to get sick. Nothing prepared me for this.

    Has anyone been able to kill these viruses using oregano oil or olive leaf?

    Has anyone tried Iodine to kill off any of these viruses? Iodine is cheap. All I can do, when not flat on back is research from bed. Dr. Sircus said effective against all pathogens.
    Last edited by a moderator: May 12, 2014
    Oredogg likes this.
  17. SOC

    SOC Moderator and Senior Member

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    @saint,
    If you don't have insurance, Valcyte is probably out of the question. It's terribly expensive. I have heard that it will be available as a legal generic in a year or two, which will help.

    I don't appreciate that remark. My husband is (and I was at one time) a government worker. He is paid significantly less than he would be making in the private sector, but felt doing the work he does for the government is a valuable service to the country and therefore worth the sacrifice. He has NEVER had anything resembling a million dollar vacation, and is not even allowed to take ANYTHING that could be construed as a bribe including pens or meals or pads of sticky notes. After 9/11 he was gone from home almost continually for more than a year. We saw not one cent of overtime pay, and nothing more than an "attaboy" for all his extra effort. Not only that, but government employee wages have been frozen much of the time since, so he hasn't even gotten cost of living increases.

    The myth that government workers are getting rich off the taxpayers is utter nonsense. In fact, they get less pay, less cost of living increases, and fewer perks than private sector workers in most areas.

    We used to feel that public service was important. Lately however, after listening to the lies and cruel remarks put about by some groups of taxpayers, we've come to feel that our service was a pathetic, idealistic waste of life and talent for the benefit of a bunch of mean and selfish people who expect us not only to sacrifice to serve, but to feel guilty for doing so.
    searcher, IreneF and NK17 like this.
  18. Daffodil

    Daffodil Senior Member

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    demeirleir doesn't prescribe valcyte to my knowledge...I think he uses other antivirals such as GCMAF...and he is probably the best specialist in the world.

    valcyte is available cheaply in india. they have been making generic valcyte for many years, despite continued litigation by roche.

    I think apotex is making it in Canada despite pending lawsuit by roche.
  19. saint

    saint Senior Member

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  20. saint

    saint Senior Member

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    I was not referring to "All" government workers. You can never paint everyone with the same brush. There are many hard-working people who work in the government; I have family members who do.

    My husband & I were listening to Dennis Praeger on talk-radio and he said the president & vice-president spent 40 million on taxpayer-funded vacations. When I am struggling to get out of bed to drag myself around and many days go without lunch because my husband can't afford to stay home to help me, then, yes, I take issue with this.

    They take 1/3 of his paycheck that I could use to pay someone to come help me. Some nights I beg God that I won't wake up the next day. Everyone reading this has probably felt the same way at one time or more. I was talking to a young man in Alabama when went to see Dr. P. He was very annoyed about caste system in our country. He said there was going to be civil disobedience; reminded me of what my mother said before she went to heaven: this country has been sold down the river, and there is going to be another Revolution. -

    This is off-topic - but when you are struggling under such a heavy burden of ill-health that you can't carry, and having money you desperately need for medication and health-care being forcibly taken out of your income to pay for other people's playtime, then something is seriously wrong.
    Last edited by a moderator: May 12, 2014
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