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Third day on Valcyte. So far so good.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by vamah, Feb 24, 2013.

  1. vamah

    vamah Senior Member

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    I'm in my third day on Valcyte, 900mg 2x/day. So far the side effects are manageable. All day yesterday I had chills that felt like a fever, but my temp wasn't high. Feel like there's a mild electric current pulsing through every nerve in my body -- I had that when I started acyclovir also. Also have had roaring sound in my ears when I lie down. Today body aches are pretty bad, but I can handle. Was expecting to be very tired, but I actually have been so agitated that I'm having more trouble sleeping. All in all, things going well.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    can u tell us what u have been tested positive for eg cmv or hhv6 etc and any nk function testing?
    Thanks for posting your experience, i hope u continue to post on this has all these experience help others make better informed decisions about this type of treatment. I hope u improves heaps, all the best.

    cheers!!
    Sasha likes this.
  3. vamah

    vamah Senior Member

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    I tested positive for HHV 6 (1:1280). I am fairly sure I have EBV also, but I had been taking acyclovir for cold sores and that works with EBV also so my anitibody levels were normal (that's just conjecture on my part, of course, but I have good reason to think that it's true). My symptoms were all neurologic (insomnia, anxiety, depression) until the past year or so when I developed fatigue, body aches, PEM, possibly OI. Thanks for the good wishes!
    heapsreal likes this.
  4. vamah

    vamah Senior Member

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    Fatigue hit pretty hard today. Like regular CFS on crack, even though I got a decent amount of sleep last night. Just feels like my whole body is filled with sand and is and getting up off the couch seems like more than I can manage. Taking this as a good sign though, that the drug is fighting something big.
  5. Ruthie24

    Ruthie24 Senior Member

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    Thanks for posting this info. Trying to decide between starting valcyte right off or maybe easing into it by doing famvir first and then going onto valcyte later. I really appreciate you sharing your info/experiences here.

    Hope this goes well for you!
    Sasha likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    there was a school of thought that those who started on valtrex or famvir had an easier time later on with valcyte.

    Also for some valcyte helped with cmv/hhv6 but didnt help much with ebv so they had to add valtrex/famvir with the valcyte to get on top of all the herpes infections.

    Personally valcyte smashed me and i stopped and started a few times until i could tolerate it. treating sinusitis as well as adrenal hormones dhea/pregnenolone after a few attempts at valcyte, seemed to make it easier for me to tolerate the valcyte. So maybe treating other abnormalities that u know of can help one tolerate valcyte better and probably more of a chance of needing to do this the longer one has been ill?? Just a thought?

    cheers!!!
    SOC likes this.
  7. Ruthie24

    Ruthie24 Senior Member

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    @heaps- how did you know about the adrenal hormones being off? In general all my routine labs seem to come back "normal". Had cortisol etc testing done a coupe years ago which were normal then.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    blood tests showed my dhea had bottomed out and cortisol was low normal which isnt optimal for morning cortisol. I had previously been experimenting getting the right levels which took some time as i had to start with very low doses and slowlyy increase them to avoid side effects(overstimulation). I also had to stay on doxycycline to keep sinusitis at bay. I think all this helped me to tolerate valcyte.

    Interpretation of labs depends on the doctor who can tell the difference between normal range and optimal, eg dhea should test in the middle to upper levels of the normal range to be optimal. some docs will say its ok to have dhea in the low normal range, ok for an 80 y/o?? my dhea was not even in the normal range so i think treating this was important for me.
  9. vamah

    vamah Senior Member

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    I had been on acyclovir for a few months prior to starting on valcyte. I am wondering if I would be feeling worse if I had gone straight to valcyte because acyclovir works on EBV. However, my HHV 6 titers are through the roof, so the valcyte still has a lot of killing to do. ;)
    heapsreal likes this.
  10. Marianarchy

    Marianarchy

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    My Valcyte experience has been very similar so far. I had 7 months of Famvir before added in the Valcyte. I am taking 900 mg Valcyte twice daily for 3 weeks. I have flu-like symptoms; severe fatigue, weakness, the feeling of being chilled and I can't get warm, headache, dizziness, a little stomach upset. It is like a very bad CFS flair. I also feel like this is a good sign. I have been giving in to the symptoms and sleeping a lot. I was very worried that I wouldn't be able to handle the side effects of Valcyte. So far, the side effects are tolerable. My first CBC and CMP labs came back and they are normal.
    RUkiddingME and heapsreal like this.
  11. vamah

    vamah Senior Member

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    That is how I feel exactly. Getting my bloodwork tomorrow. Keeping my fingers crossed.
  12. vamah

    vamah Senior Member

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    The past 2 days have been extremely rough. Yesterday I finally put 2 and 2 together about what is causing my valcyte reaction to get worse at certain points in the day. I realized that, while I am okay doing routine tasks, anything where I have to use my brain causes symptoms to flare. This happened when I tried to do some work from home. After 15 minutes I felt dizzy and overwhelmingly tired and couldn't get off the couch for hours. The same happened when I tried to do other things where I had to concentrate and think. The situation seems similar to if I had a concussion. This virus is in my brain and the die off reaction is making my brain freak out. Anything requiring thought makes me get a bad headache and feel dizzy and nauseous and unbelievably tired. So, I am trying to let my brain rest. I may be offline for a while because looking at the computer screen sets off the same reaction. I am generally ok, though. Just have to avoid certain things. ;)
    heapsreal likes this.
  13. Sasha

    Sasha Fine, thank you

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    Sorry to hear that, vamah, take it easy. :hug:

    I'm grateful to you for posting - I'm trying to arrange to get onto Valcyte myself and it's useful to know what to expect (in my case, I'm wondering if I should ask to move in with family for a while,, in case I can't look after myself).
  14. SOC

    SOC Moderator and Senior Member

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    If you can do it, I'd recommend it. It seemed to me that the more rest I got, the faster I saw improvement with Valcyte. Depending on your relationship with family, I'd keep the "visit" time flexible. Not everyone gets the bad stretch with Valcyte right away. It's more common for it to start 1-4 months after you first start taking Valcyte, I've heard.
    RUkiddingME likes this.
  15. Sasha

    Sasha Fine, thank you

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    Thanks, SOC, that's interesting.

    My family live a long way away and I'm worried that if we leave it until I get too sick on the Valcyte to cope, I'll also be too sick to travel. My family are great but it's stressful just living in someone else's house! Depending on what state I end up in, it might be better to arrange for paid care here.

    Any idea how long the bad stretch lasts, for most people?
  16. SOC

    SOC Moderator and Senior Member

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    Now I'm really in the hearsay dept, but it seems like people have mentioned that it lasts about a month, with a lot of variation from person to person. For me, it didn't start until 4 months after I started Valcyte and it lasted 8-10 weeks, although it wasn't the same "bad" the whole time. I don't think it's common to have it that late or that long.

    On the positive side, both my uncle and my daughter had no problems with Valcyte whatsoever. I think the difference between them and me is that my immune system was in worse shape then theirs and I had more coinfections. Just a guess, though.
  17. Sasha

    Sasha Fine, thank you

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    That's interesting. I'm mugging up on the Valcyte papers (Watts, Kogelnik, Lerner) and the first one suggests that if you don't get the horrible stuff at the beginning, you're a non-responder. I don't have my brains in, though, so I'm not managed to read them very well!
  18. RUkiddingME

    RUkiddingME Senior Member

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    I'm also very familiar with those papers and that's why I'm getting nervous. On my 8th week of Valcyte with no side-effects or die off except for crash period which means extra fatigue and weakness but I'm mostly bedridden already. I'm still hopefull thought. It's early yet...
  19. RUkiddingME

    RUkiddingME Senior Member

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    Thanks for that SOC. It's a relief to hear! In my 8th week with nothing happening. My friends laugh when I say I'm hoping to get worse! lol Maybe I also will be one of the few that breeze through this treatment and improve without going through hell first.
    Sasha likes this.
  20. SOC

    SOC Moderator and Senior Member

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    From my family's experience, it seems likely you will breeze through without going through hell. Even better, both of my family members who had easy rides with Valcyte also went into remission. :D Both were on Valcyte for a long time -- 20 months for one and some years for the other.

    Good luck! Keeping my fingers crossed for you.
    RUkiddingME and Sasha like this.

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