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Valcyte help please !!!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Omar88, Jul 10, 2013.

  1. Omar88

    Omar88 Senior Member

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    Hey guys am on Valcyte since 5 months but in the last month i got a bronchitis that its not leaving me and its hurting enough that i cant live my day except if i am on my pain killers cause all my chest and back are hurting with body aches all over my body and my doctor cant figure why after 3 courses of AB it still here !!

    Is there specific test i should run either than Mycoplasma, Chlamydia pn IGG, IGM and ASO cause i will run them tomorrow and after a week i will have a new sputum culture and throat culture too " all on me as my doctor doesnt know what to do i will have them in a lab out side the hospital" ?? and btw should i wait for the antibody tests after i finish my AB cause i just finished the AB today so would it change the Antibody results like the culture so i should wait for a week ?

    My main problem is my WBC went from 10 to 5 in those 5 months and since 2 months or little more i start to get more and more infection and am talking about sore throat and Tonsils but with short course of 3-5 days of AB the problem was always resolved and i was doing great with my fatigue and my lymph node trouble and some other symptoms so i didnt want to stop taking Valcyte !

    Now my doctor is afraid and he thinks i should stop the medication for a while and see what will happen when my WBC goes up and if my symptoms are due long term of heavy medication !! " am his first CFS case so he is lost"

    Guys can i cut the treatment and get back to it ?? that would not make the body resistance for it ??

    Should i buy some immune modulators like immunovir or any other brand you guys tried while am on my treatment so it will simulate my immune system ??

    How can i rise my WBC as am taking every thing already multi Vitamins , Zinc , Garlic , Vitamin D some Chinese and Arabian herbs ??

    Please guys am having a really bad time and i need your help
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Neutrophils are what we need to fight bacterial infections and valcyte I think has lowered my neutrophils and made it hard go shake sinus infections. Not sure if there are many things that can increase neutrophils. But supposedly after 3 months off valcyte they bounce back?? You could come off valcyte and go on to famvir until neutrophils come back up and in the mean time stay on abx???
  3. Omar88

    Omar88 Senior Member

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    First of all thanks for the replay heapsreal :)

    So you think I should switch to famvir for a while ! I will try my best cause I will afford this but I need to know what dose should I take after 3 weeks of 1800 gm and the rest of the 5 months on 900 mg ?! And doesn't famvir have the same effect on WBC's or it would increase while am on it ?

    I read you tried immunovir, so I would like to know your idea about it and other immuno modulators like Probost as they said it rise the CD 4 level and there is a good talking about immunopro as it contains immunoglobulins ?
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Low white blood count is something that your doc is suppose to monitor while on valcyte as it can be cause by the bone marrow supression which causes low white blood cells and neutropenia. I just mention famvir as an alternative as its much safer profile and less chance of lowering white blood cells then valcyte. Low whilte blood count is just going to open u up to other infections. Another alternative is to lower valcyte down to 450mg and see if after 3 months things improve and if not then maybe make the change to famvir, personally i think i would change now if your already getting bacterial infections. My thoughts are that famvir can help keep viruses low that valcyte have taken down and maybe later on valcyte can be added at a lower dose if needed.

    I used immunovir, i cant really say i felt alot from it but generally my symptoms were improved from the antivirals so hard to tell. I did have a slight increase in nk numbers with immunovir but even while on immunovir my neutrophils came down and immunovir didnt help me with bacterial sinusitis. I havent used proboost or immunopro but im taking beta glucan to try and increase immune function. Immunovir is worth a shot though but i think its the valcyte thats your main issue.

    As for doses of famvir??? I manage on 250mg twice a day, others 500mg 2-3 times a day, thats sort of the average i have seen people use here but i have seen people use much higher doses but maybe 500mg twice a day is enough until white blood cells recover?? You also may need to stay on antibiotics for 3 months after stopping valcyte to prevent any bacterial infections until white cells come up??

    Just looking at your first post, yes u can stop and go back on it later. Resistence is always possible i guess but i have read where dr montoya has had patients improve greatly who have relapsed several years later and have once again responded to valcyte when put back on it.

    Obviously follow your docs advice but go talk it over with him whats mentioned here. This might help him problem solve your situation. Low white blood counts have happened to other cfsers using valcyte and things improved once they stopped.

    good luck,
    cheers!!!
  5. Mij

    Mij Senior Member

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    Cautions and Warnings About Valcyte as A Chronic Fatigue Syndrome Treatment

    Dr. Montoya’s 25 CFS patients did not suffer dangerous side effects when he treated them with Valcyte. However chronic fatigue syndrome physicians are also very clear: Valcyte is a drug with potential toxicity. The body converts Valcyte into Ganciclovir, a well established but potentially toxic anti-viral medicine. Valcyte is approved by the FDA to treat CMV virus. It does not have an FDA indication for HHV-6 or as a treatment for chronic fatigue syndrome.
    Potential side-effects of Valcyte/Ganciclovir include suppression of white blood cells, red blood cells and/or platelets. Low white blood cells increases risk for infection; low red blood cells causes anemia; low platelets increase risk for bleeding. If not monitored, detected and reversed, these complications can be fatal. Fortunately, side-effects can usually be reversed by stopping the Valcyte or by lowering its dose.
    Valcyte’s side effects can also include nausea, diarrhea, abdominal pain, fever, headache, insomnia, mood changes, tingling sensation--and much less commonly, epileptic seizures. In animal studies, Ganciclovir can cause cancer.
    For Chronic Fatigue Syndrome HHV 6 and other Valcyte treatments, CFS patients should have blood tests monitored often (e.g. weekly).

    http://www.drpodell.org/chronic-fatigue-syndrome-hhv6.shtml
    jimells and heapsreal like this.
  6. Omar88

    Omar88 Senior Member

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    I will try the dose you are taking because its very expensive here this will cost me monthly 400$ and am not sure if i can afford it for more than one month except if i can buy it from internet so the price would be much less !!

    I will keep reading about immuno modulators and see what is the best for me and order it if they would let it in with the famvir because i still have to chick with gov pharma agency if that's legal !!!!

    I would not take AB except if my tests shows something because i dont need more toxic in my blood and i dont want an AB resistance if i took some antibiotics less than i have to take them again and again

    Finally what to do you think about colloidal silver ? some people tried it and had good advantage of it and is there other natural AB did you try and where good ?

    Thanks alot
  7. Omar88

    Omar88 Senior Member

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    Its a bad thing we had to do it cause we didnt have other choices
    SOC and Valentijn like this.
  8. Mij

    Mij Senior Member

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    I would have considered it for myself but because I didn't have a knowledgeable doctor and my WBC is already down at 3.2 I would have been scared to try it. I've already experienced negative results/relapses from taking immune modulators (ie: imunovir) in the past and have not recovered since, that was 13yrs ago.

    From my own personal experiences having ME for 22yrs I no longer take chances with meds unless I have a knowledgeable doctor who does proper testing before, during and after treatments. It's no longer a guessing game for me.

    I hope you have positive results with Valcyte and that you continue to improve.
    Valentijn likes this.
  9. Omar88

    Omar88 Senior Member

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    Thank you i hope you will see a good doctor soon
  10. Omar88

    Omar88 Senior Member

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    Do you think taking 250 mg daily will be benefit ?? because its really so expensive and i cant afford 500 mg daily for 400$ monthly !!
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would atleast take 250mg twice a day. $75 a month??
    https://www.clearskypharmacy.net/generic-famvir-famtrex-by-cipla.html
    My understanding is that those who have had low white counts on val reversed when they stopped treatment with val. Some people are just more likely then others to have issues. Maybe restarting it down the track at a lower dose and staying there would be different. You may find that the 5 months on valcyte has helped and once white count comes up you will feel alot better, we hope??

    cheers!!!
  12. SOC

    SOC Moderator and Senior Member

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    One serious side effect of Valcyte that your doc should be watching for is neutropenia, as Heapsreal has said. Your white blood cell could should return to normal once you stop taking Valcyte if you stop taking it soon enough. This is why it is absolutely critical to have careful monitoring when you take Valcyte. You also have to watch for liver toxicity as well.

    My daughter and I both took Valcyte for HHV-6 for about 2 years. Our WBC dropped, but only slightly in that time. I believe that the high induction dose (1800 mg) is no longer used by ME/CFS specialists because of its tendency to cause neutropenia, especially in patients who need long-term treatment. If I were in your shoes Omar, I would stop the Valcyte immediately. If my WBC went back to normal, I would try again, but start at a low dose and work up over several weeks to the 900 mg dose. I was taking 1350 mg eventually, but only after it was clear I didn't have a tendency to develop neutropenia.

    Omar88, if you are managing to afford Valcyte, I don't think Famvir will be a financial problem. As I understand it, Famvir is currently much cheaper than Valcyte. That may depend on where you live, of course.

    I'm hearing good things about Famvir for HHV-6, maybe not quite as effective, but less toxic. Since it's less toxic than Valcyte and you're having Valcyte toxicity problems, it seems that Famvir would be a good thing to try.

    Because most (all?) of us have immune dysfunction, normal length courses of antibiotics may not be enough for us. I had Chlamydophila (formerly Chlamyadia) pneumoniae and had to take clarithromycin for about a year to clear it. ( I think it's come back now a year later. :cry:).

    The problem with immune-affecting drugs or supplements is that if you don't know what exactly is wrong with your immune system, how do you know what to take, or not take? How do you know it isn't making the problem worse? :eek:

    Several ME/CFS specialist docs use Immunovir, so I imagine it would be one of the most likely to work or least likely to hurt. Colloidal silver can be dangerous. No ME/CFS specialist that I know of uses it. I wouldn't try it.

    Good luck!
    Ema, Mij, heapsreal and 1 other person like this.
  13. Omar88

    Omar88 Senior Member

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    Its not in this price here and if i can get it by mail it should be send by DHL or FEDEX and the website says they dont use them !! so can i send you the money and the mail expenses in DHL or FEDEX and you would send it for me please ?

    Thanks for every thing
  14. Omar88

    Omar88 Senior Member

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    My doctor used to run test for me every month and am still under normal WBC count but 1 more less on the scale and it would be not in the normal any more !!

    You made afraid when you said "our white blood cell could should return to normal once you stop taking Valcyteif you stop taking it soon enough" is there any situations like this because i didnt hear about this before and my doctor said it will increase when i cut it down !!!

    My hospital use Valcyte for cancer and transplant patients but they dont have famvir !! the only other antiviral they have is zovirax and it wont help me,,,

    The price of Famvir here monthly is 400$ and i have tests i run by my own and other herbs, vitamins and other stuff to help me me and my immune system

    Thanks for the good information
  15. SOC

    SOC Moderator and Senior Member

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    If your WBC is still normal, you are likely okay with the Valcyte so far. You can go a little below the normal level and also be okay. Low normal WBC count is not considered neutropenia and should not have a serious effect on your ability to fight infections. As your doctor said, your WBC should increase again once you stop (or cut back the dose of) Valcyte. Your doctor seems to be watching you carefully and to understand the problems with Valcyte. I would follow his advice.

    My concern is with people who take Valcyte under the supervision of doctors who don't understand the medication, or people who are not under the supervision of any doctor. :eek: They could develop moderate-severe neutropenia without knowing it -- now that would be very dangerous.


    Some people with ME/CFS have reported an IRIS (Immune Reconstitution Inflammatory Syndrome)-like reaction while taking Valcyte. It occurs when a suppressed immune system starts to function again and goes after existing, but previously unrecognized infections. IRIS is most well known in HIV after patients start antiretroviral therapy. You and your doctor might want to read up on it and see if that might be your problem with infections. It feels terrible, but it's generally a good sign.

    With Valcyte, the IRIS-like reaction seems to start (if it does) between 1 and 6 months after starting the medication. That's right where you are, right? I had one starting about 4 months into Valcyte treatment. It lasted about 10 weeks and felt like a really bad ME/CFS crash. I had a sore throat, bronchitis, sinusitis, swollen lymph nodes, rashes, muscle aches... all kinds of ugly stuff. Nasty, but bearable. As soon as it was over, I felt a lot better than I'd felt in years. My daughter, on the other hand, had no IRIS-type reaction at all. Clearly, no everybody responds the same.

    My suggestion is that you remain calm. No one said Valcyte treatment was going to be easy. Your doctor seems to be aware of the potential problems and is watching you carefully. While you should always keep yourself informed about your treatments and make your own decisions, I think you also need to listen to the advice of a good doctor, which yours seems to be.
    Marianarchy likes this.
  16. Omar88

    Omar88 Senior Member

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    My doctor is not that good as you think ! he cost me 6000 $ for tests and treatments outside because he didnt believe am really sick until i had reactivated CMV that my number been doubled 10 times on the IgG levels and my PCR which i sent to Germany was positive he had to gave me something and he was going to put me on 3 weeks treatment of Valcyte only but we had a big fight and i brought Stanford protocol and he accept it after year and half of seeing him without even pain killers :)

    He used to write in every visit that my illness might be due my anxiety until my tests showed something he cant leave it and he had to treat it specially that my dad knew the hospital manager

    Since the CMV positive test he became much better until this thing happened !! now he is afraid and he is thinking of cutting the treatment and he start saying that he didnt want to do this since we started it !!

    IRIS is might be what is happening to me or it might be my low WBC as am on the line between normal and un normal ,, maybe my body need more WBC as am having chronic infections already !!

    How can i knw if its IRIS or the Low WBC in your opinion ??

    I already cut down the dose to 450 mg daily and am thinking to go for famvir until my WBC goes up again for 3 months but what about if it IRIS should i continue taking it so i would get much better after that ??

    Thanks again
  17. SOC

    SOC Moderator and Senior Member

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    It's my impression from some of your earlier posts that you aren't sure you have ME/CFS, but are sure you have a serious infection or infections, so what I'm saying may not apply to you. I guess you'll have to decide about that. :)

    Since your WBC is still in the normal range, I don't think that is likely to be your main problem with infections. People with ME/CFS have immune dysfunctions including poor natural killer cell function (not necessarily number), low cytotoxic t-cells, and others. If you have ME/CFS, those things are more likely to be the cause of your inability to deal effectively with infections.

    If you are worried enough about your WBC that it is causing you additional stress, it is probably wise to stop taking Valcyte. Anxiety and stress can only compound immune system problems.

    I have absolutely no way of knowing what might be causing your problem with infections. I mentioned IRIS as a possibility to discuss with your doctor, but there are plenty of other reasons that you and he should investigate. Chronic infections are a problem that people with ME/CFS deal with constantly. We don't have a single good, easy solution as you'll see as you read other parts of this forum.

    Valcyte can be a difficult medicine. It has the potential for being highly toxic. It can make you feel horrible. Some side effects require that you are willing to take some risks. It is not a treatment for the faint of heart. Even my daughter, who had no IRIS-type or other significant reaction, took the risk of slight WBC count decrease and slight liver enzyme increase. Those side effects are not terrible and are reversible if caught early. It was a risk we were willing to take for the chance to save her future.

    Ultimately, you need to make your own decisions about what treatments you take, and how much risk you're willing to take.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Omar88 clarify your wbc is it low as in out of range low or just come down from previous tests but still within normal range. If its still within normal range i wouldnt stress too much about it, these numbers can fluctuate within there ranges. if its outside the normal range then it could be a reason for the chest infections your getting.
  19. Charles555nc

    Charles555nc Senior Member

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    I think its healthy to take short breaks (like weekends off) while on Valcyte to break up any effect it has on your white blood cells or if you are herxing bad. I couldnt take Valcyte until I was on famvir for 6 months first. And famvir gave me full body aches (9 out of 10 pain level) for a week straight that I treated with some occassional lose dose aspirin that worked amazingly well.

    NAC is good for dealing with toxic side effects, helps the lungs, and helps kill c. pneumoniae, a common respiratory/systemic co infection. I take1200mg a day. 3 to 5 grams of vitamin C a day isnt bad either.

    DMSA, an oral chelator taken a couple hours after the meds, also weridly helped with my Famvir and Valcyte side effects. about 300 mg 2 hours before and after food, one time a day, but not to be used every day.
    heapsreal likes this.
  20. Omar88

    Omar88 Senior Member

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    I have an active herpes infections such like people with CFS/ME and i have been diagnosed with it from 6 specialist 3 of them are infection disease doctors after they looked to my symptoms,,

    Yes am not 100% sure if i got typical CFS/ME like any one of us cause we dont have a definition that we could go under it, and i read people here have different viruses, bacterial infection.

    I got my illness after a sexual contact but it might be that my body couldnt handle the CMV like my doctor say specially that i got it with a bacterial STD that wasn't treated until a month later when the virus already came over my immune my system and btw i still have prostatitis so the infection wasnt treated well beside i still dont know what is it but mostly its a Mycoplamsa or Ureaplasma and i hope that treating it soon will make a difference !

    Am not stressed but something wrong is happening in my chest and my body and we dont have a CFS doctor here so am working this all over by my self, i ask for tests and treatment protocols and i search for them so I have to know is it a bacterial infection cause i dont think viral will stay this much ! or it is something else ,,,

    Finally Am sorry for what is happening for young daughter

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