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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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    What I've heard is 3-4 weeks, with the worst part in the first week or so then gradually improving until you are back to "normal." Then 3-6 months to see improvement. This may also have to do with dropping to a lower dose after 3 weeks. It's okay to take a day or a dose off if symptoms are really bad -- it won't set back recovery. And there are vitamins and suppliments that can help ease symptoms.


    It's interesting to hear about people not having an initial reaction but having one months into treatment. Logic would say that you would either have die off at the beginning or not at all, but this is clearly not the case. I wonder if different viruses react differently or if it has to do with whether you start with a high dose or lower dose. Would be interested to hear from those who had a delayed reaction what virus(es) they had and what protocol they used. Maybe viruses just don't follow our human logic. ;)
     
  2. vamah

    vamah Senior Member

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    I am feeling better today. I tend to feel better in the morning and worse as the day goes on, but I'm hopeful that I hit bottom and am now on my way back to "normal." I am a very impatient person, so I have to remind myself that these things take time and not to push myself. I've spent the week doing little besides resting -- a huge effort for me, but worthwhile if I continue to feel better. Blood tests today, but I don't have any reason to think they won't be normal. Depending on how I feel today, I may take tomorrow off to give myself a break.
     
    Sasha likes this.
  3. Sasha

    Sasha Fine, thank you

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    I think I read it's a Herx reaction and not die-off - it's that the viruses are being prevented from replicating. Dunno if I've got this confused. :ill:
     
  4. SOC

    SOC Moderator and Senior Member

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    Antivirals don't kill viruses directly, so a herx reaction is extremely unlikely. Antivirals stop viral replication so the virus can't continue to spread. It's still up to your immune system or normal cell death to kill off infected cells and that doesn't happen all at once like it can with antibacterials. Herx reaction is (supposedly) the reaction of the body to a sudden increase of dead bacteria parts which it has to process.

    The reaction to antivirals is more likely to be something like an IRIS (immune reconstitution inflammatory syndrome) situation.
    http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome

    By that logic, it makes sense that the reaction to the antiviral is delayed because it takes some time for the immune system to recover. This is not documented in any scientific study for ME/CFS, but it's fairly well established in HIV and other conditions with immune impairment.

    It is unlikely that a immediate reaction to an antiviral is an IRIS-type reaction, however, since the immune recovery doesn't happen overnight. But it can't be a herx, either, unless the Valcyte is doing something unexpected that kills off a bacterial or fungal pathogen. It might be a toxicity/adaptation reaction of some sort.
     
    Mercy likes this.
  5. vamah

    vamah Senior Member

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    I guess I use "Herx" and "die-off" interchangably because they sort of amount to the same thing in terms of the reaction.
     
  6. Sasha

    Sasha Fine, thank you

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    Either way, it doesn't sound like much fun! But at least it's a good sign that something's happening. :)
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When u get down to dosing once a day try dosing it at night so u can sleep through the bad part, sleep meds can help then too?
     
    Sasha likes this.
  8. vamah

    vamah Senior Member

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    Oh, I don't even try to sleep without meds anymore. Insomnia was the symptom that first indicated something was seriously wrong.
     
  9. vamah

    vamah Senior Member

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    Got my blood test results back yesterday and all good! Also took a dose off yesterday and it made a definite difference in how I feel. Am having ups and downs, but hopeful that the trend is good.
     
  10. Ruthie24

    Ruthie24 Senior Member

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    Glad to see that you are able to hang in there and the labs are still ok. :thumbsup: Thanks for the update!
     
  11. Jacque

    Jacque Senior Member

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    Hey yall... appreciate all of your posts I just read through... anything to give me a little bit of hope at this point. The Rituxan does not appear to be doing much of anything after 10 months I am still "couchin" it and I just feel my life unraveling. So now Dr. K is gonna add Valcyte to the program as soon as I hopefully get approved for patient assistance. Oh the thought of getting any sicker is just not a happy one... I have been through soooo many herx's and immune responses in the last 35 years and have gotten NO WHERE...

    Do any of you know the incidence of cancer in the animals they mention on the Valcyte? Anyone have any suggestions for me or advice?
     
  12. Jacque

    Jacque Senior Member

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    !!
    Hey Heapsreal
    Hi Heapsreal...great to chat again... how long have u been on the Valcyte now?? How is it goin for you?
     
  13. Jacque

    Jacque Senior Member

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    SOC that is muuuuusic to my ears!!!! Can you tell me how long they were ill and was PAIN an issue for them? haha can you tell I am a little desperate here????
    How much is the Valcyte drug anyhow? I am trying to get approved for patient assistance but no one has really told me how much it is??
    T
     
  14. Jacque

    Jacque Senior Member

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    SOC that is musicccc to my earrrrs! How long were your family members ill do you know? and did they have PAIN? (my main issue)
    I wonder if those who go through the hell first with Valcyte have Lyme? hmmm
    I am currently applying for the patient assistance for the Valcyte to add to the Rituaxan... How much does that stuff cost anyhow? No one has told me.
    You all are an encouragement to me!! XXX
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Jacque,
    12 months now on valcyte and 4 years on famvir(time flies). I went from a 3 out of 10 to a 6 on famvir and valcyte another 2 points to 8 out of 10. I started valcyte on 1 tab a night, i think after a couple of months increased to 2 tabs a night. Recently have just cut back to 1 tab a night as i think now my response to antivirals has platued and now persuing a few other things to try and get to a 10??? I did have a few attempts at valcyte before i could tolerate it as it was quite hard the first couple of attempts, but my main reason for stopping was that i had to work and i wouldnt havent been able to work in the state i was, i may have been able to keep going if i didnt have to work and could have rested in bed until things improved. I am also on immunovir to help improve my immune function.

    I think im very much in the herpes virus sub group as i had cmv mono followed by chickenpox and then ebv mono all within 6 month period 11 years ago.

    I think if your doc suspects that u have active herpes viruses like ebv/cmv/hhv6 then its definately worth going down the antiviral path.

    good luck,
    cheers!!!
     
  16. Jacque

    Jacque Senior Member

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    Good Grief...I wish I would have just gone with the Valcyte to begin with... my bank account would look a lot better...ughhhhhhh Wow.... I am sooooooooooooooooooooooooooooooooooooooooo excited to read your news... were you in any pain????? Please say yes... My neuropathy is making me insannnne. Wow you are at an 8!!!! is your insurance covering it? Yes I have NK cells in tank and HHV6 EBV hsv 1 and 2 through the stinkin roof...but I also have Lyme. Do you think I should do Immunovir to the mix? Or did you recently add it on? Gonna have to look that one up... So many drugs, labels, theories... my head just spins...and since being on Rituxan my cognitive is way worse for some reason.... THANK YOU for the inspiration and information.
     
  17. SOC

    SOC Moderator and Senior Member

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    Both of my family member who are in remission had ME/CFS for about 5-6 years, although both had mild cases for most of that time. My daughter was seriously ill for about a year before she started Valcyte. I wouldn't say pain was a major factor for either of them, but I know my daughter had muscle aches, but no severe pain.

    Valcyte is incredibly expensive. I seem to recall that it cost about $50 per pill, so $150 per day. So for two of us taking Valcyte at the same time it was over $100,000 per year --- for two years. :eek: I would certainly apply for patient assistance if you're eligible. ;) Insurance may also cover it if the reason for treatment is given as CMV or HHV-6 infection.
     
  18. vamah

    vamah Senior Member

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    So, I am at almost 2 weeks now. Extreme fatigue has subsided and I went back to work this week (part-time). I am getting incredibly bad headaches, though. I feel ok in the morning, but by early to mid afternoon my head feels like it's being stepped on by an elephant and I am dizzy and lightheaded. Takes 4 advil to even take the edge off. I am assuming this is because, as the day goes on, I am getting more and more tired. If it continues this bad, I may take another dose off but I am trying not to. Only have a week to go before dropping to a lower dose, so trying to tough it out. :)
     
    Sasha likes this.
  19. Sasha

    Sasha Fine, thank you

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    :eek: is right! Is there a generic version?
     
  20. vamah

    vamah Senior Member

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    No. No generic version. Part of why it is so expensive. I think about $1000-1500 a month without insurance.
     

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