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Can you quit Valcyte cold turkey or should I taper off?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by RUkiddingME, Apr 7, 2014.

  1. RUkiddingME

    RUkiddingME Senior Member

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    I have one more week of Vallcyte to go and wondering if I should decrease to one tablet a day and make it last two weeks instead of one? My doctor says to expect to feel crappy for two weeks after stopping it. Maybe going slow would help? am still on Famvir 3 grams a day
     
    NK17 likes this.
  2. vamah

    vamah Senior Member

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    I was told it is fine to just stop. I was on it for over a year and didn't really feel any differently after I stopped.
     
  3. Ema

    Ema Senior Member

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    I've never heard that you have to taper off.
     
  4. SOC

    SOC

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    I was told it was fine to just stop, too. Daughter and I both did it that way and neither of us felt any differently. There's nothing about the action of Valcyte that would suggest stopping suddenly should cause any problems.
     
    Last edited: Apr 7, 2014
  5. RUkiddingME

    RUkiddingME Senior Member

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    Great, thanks everyone!
     
    Kina likes this.
  6. minkeygirl

    minkeygirl But I Look So Good.

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    I think @heapsreal just goes on and off with no problem.
     
  7. Kati

    Kati Patient in training

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    i have a question, I have just started Valcyte a month ago and I have gained 6pounds so far which doesn't please me at all since weight is an issue. What has been your experience?
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Should be able to just stop valcyte. Its scary to think you have to come off after a med like this has given you improvement. But there have been a few of us who if/when viral symptoms returned were able to get improvements again when we went back on valcyte and it seems to improve us quicker the second time around, maybe the initial long course of valcyte has got the viral load down alot, so if we jump on a viral reactivation early then we can get on top of it quicker. I guess we have to remember that many of us have probably had the viruses constantly reactivating in us for years which was why our viral loads were initially so high.

    The end of last year i stop both famvir and valcyte as it was negatively impacting my neutrophil count which was affecting my sinusitis. SInce stopping, my neutrophils have come up some although still low but better then they were. For me i only lasted a month of before viral symptoms returned(dam immune system). WHere i then went back on valcyte for 2 weeks, this was after talking to my doc and taking my low neutrophil count into consideration. Within 3 days of valcyte i felt alot of improvement. I have done 2 of these 2 weeks courses of valcyte so far which have helped. I also did one course of famvir only not expecting it to help but it did, maybe(??) coming off famvir for awhile was a good thing, maybe there is some type of tolerance to famvir?? ANyway my doc said the antivirals like famvir were meant to be used in a cyclic fashion, this was after i brought up possible av resistance, i dont fully understand this but he said its totally different to antibiotic resistance. SO since off av's regularly, im starting to lasting longer off av's and my sinusitis is easier to treat since my neutrophils have come up.

    I think an important thing is to improve immune function when off av's, for some it bounces back once viruses are down, for some of us this doesnt happen as easy. I tried a few things like ahcc and inosine which didnt seem to help. SO i have stuck with what has worked for me in the past which is cycloferon and immunovir which i alternate between every month or so. I havent been tested recently but both in the past those substances either improved nk function or increased nk numbers.

    I think for many of us we have improved but still have some symptoms, so not 100%. At this stage im also persuing the hpa axis issues(adrenal fatigue), so trying to improve hormone function etc I think even though we have treated the infections we maybe in a post viral state which takes time to come out of as well and maybe some things are permanently damaged by ME and these infections which leaves us with some symptoms. For me i still have sleep issues but its alot more managable then it was in the peak of my badness. EG some still have some issues with pots/oi .

    I think we still have to be careful with activity but our boundaries are alot bigger then they once were. Many symptoms have greatly reduced, for me less headaches, brain fog, cognitive issues decreased, better stamina at work. Am i 100%, no, but im glad i have used antivirals as it has improved my quality of life.

    Sorry for the long dribble, hope u get some reassurance out of it.

    cheers!!
     
    helen1 likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont know Kati, my weight jumps up and down anyway. I have actually put weight on since stopping valcyte??
     
  10. SOC

    SOC

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    We didn't gain weight with Valcyte, fwiw.

    Eta: I've found it much easier to lose weight since I started taking TMG. Much less hunger. Can't explain it, just reporting it. :D
     
  11. Kati

    Kati Patient in training

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    What is TMG?

    In my opinion, my weight gain has to do with the amount of inflammation there is in my body.
     
    heapsreal and rosie26 like this.
  12. RUkiddingME

    RUkiddingME Senior Member

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    Thanks for the info Heaps! I missed this reply as well.m not sure what happened there.
     
    heapsreal likes this.
  13. RUkiddingME

    RUkiddingME Senior Member

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    Hi Fellow Canadian, I have been on Valcyte a long time with no weight gain. I would be curious to know if you had any improvements on the drug? It was life changing for me
     
    ScottTriGuy likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Since the info u quoted me i have been unable stop antivirals/famvir due to relapse with general viral symptoms and shingles outbreaks . I think i will probably remain on famvir with an odd course of valcyte every so often.

    We are different to hiv in the way we clear infections but recently read that valcyte clears cmv infection in hiv people in 6 to 8 weeks. Maybe this is something that can happen for cfsers after clearing cmv or hhv6 virus and have a relapse. Just a thought if one wants to avoid long courses of valcyte.probably best to follow it with famvir/valtrex to keep viruses down or atleast slow them down??
     
    helen1, RUkiddingME and minkeygirl like this.

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