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Valcyte 13+ weeks, feeling discouraged

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by vamah, Jun 4, 2013.

  1. vamah

    vamah Senior Member

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    So I have been on Valcyte for a little over 3 months now and I am feeling discouraged because, after a brief improvement (placebo effect?), I have gotten back to how I felt before I started taking it. Well, that's not completely accurate. OI has improved and I am sleeping better, but I think the sleep is more due to sleep meds and I still rarely feel rested. Back and leg pain are consistantly bad, but I am not taking anything for pain right now. Am back to crashing on the couch every afternoon after going a few weeks not having to do that. I know it can take 6 months or a year to see results, but I am feeling very depressed right now because I was hoping to see gradual improvement.

    Currently taking valcyte 900mg, prozac 30mg in the morning. Seroquel 25mg at night (50mg on really bad nights, but then I literally can't get out of bed in the morning). Also xanax .25 a couple times a week for sleep and/or anxiety. Tried micronized zeolite and chlorella for detox, but neither seemed to help. Also taking various vitamins/minerals. Getting CBC and liver function tests monthly and they have all been normal.
  2. SOC

    SOC Moderator and Senior Member

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    Valcyte rarely works quickly for us. I saw no changes for about 3 months (iirc), then felt like major crap for about 2 months, and then started to feel noticeably better. After that, it was very, very slow improvements for another 20 months or so.

    My daughter, on the other hand, noticed some improvement in the first 2 months and then had a slow but steady improvement for another 18 months or so.

    3 months is just the beginning for Valcyte treatment. Remember that Valcyte is not killing the virus, it's stopping it from replicating. Your body still has to kill off the infected cells (not a fast or easy process with an impaired immune system) and repair any damage done. It takes time.

    Our doc told us, and our experience verified, that getting extra rest while on Valcyte is critical. I tried teaching an easy class, with transportation support and several assistants once I started feeling better. I never felt worse from the extra activity, but my improvement stopped. As soon as I went back to resting, the improvement started up again. I didn't start "working" again until after I wasn't seeing any more improvement with Valcyte.

    I suggest that you rest more, not less, to see if you can speed up your rate of improvement.
    Marianarchy, heapsreal, vamah and 3 others like this.
  3. vamah

    vamah Senior Member

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    Thanks. What you say is what I have been thinking as well. The time that I felt like I was improving was a time when I also took a lot of time off work. I have mentioned in other posts that I am seriously thinking of leaving the workplace for a while. I usually feel better after the weekend and then by Tuesday I am back to extreme fatigue and brain fog and muscle pain.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    seroquel can make it hard to get out of bed, especially if only been on it a few months. try alternating it with something else and see how u wake up on days u dont use it. It is good for sleep, sometimes best to use for catch up sleep when u dont have any plans the next day.
  5. Marianarchy

    Marianarchy

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    Are you taking the Valcyte with a fatty meal to help with absorption? I wasn't told to do this, but read it in the manufacturer's data. You want to make sure you are getting the full benefit of the drug.

    I really think that getting more rest would help you. If there is anyway you can do it, I think it might help you see improvement over the next few months.

    Don't get discouraged vamah. I agree with SOC completely. None of the AVs work quickly. I am about 6 weeks further into treatment with Valcyte than you are and I am just beginning to see improvement. Hang in there!
  6. vamah

    vamah Senior Member

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    Thanks for your encouragement. Yes, I am taking Valcyte with meals because I was aware of the need to do that. I'm wondering if I should take it at dinner rather than breakfast or lunch because then if it wipes me out it will be at night. I am feeling a bit better today. Didn't go to work and slept until 9:30 (well, on and off).
  7. Marianarchy

    Marianarchy

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    Be sure to eat an egg or avocado or some other "fatty" food with the Valcyte. My doc said it doesn't make any difference what time of day you take the single daily dose of Valcyte. It makes sense to take it in the evening so you can sleep through the unpleasant side effects.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i took the valcyte at night with dinner as i found this helped with die off/iris type symptoms better as i would be asleep through most of the worst parts.
  9. vamah

    vamah Senior Member

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    Thanks for the advice. Going to start trying valcyte in the evenings. Will be an excuse to have a bowl of ice cream for dessert. ;)
    jimells, heapsreal and Marianarchy like this.

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