Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Stopping Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Misfit Toy, Mar 3, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    Well, I tried it. After one week of being on Valcyte, I'm stopping it. Will see what happens. I was on such a small dose. 1/16 of a pill.

    I started having horrible pain in my hands that would wake me up two hours after going to bed. Every single night this is happening. Now, I suffer with fibromyalgia and Sjogrens syndrome, but I've never had this before. It's been making sleep almost impossible.

    Tonight I went to bed and the same thing happened and today I've had the worst pain I've had since my wrist surgery. I've had pain all over my body. I got up at 3 am and thought....

    Something is doing this. This is NOT me. Stopping Valcyte. This isn't completely shocking since every antiviral medicine affects me with arthritis like pain. The Acyclovir caused my hands to curl up into a claw and I had pins and needles in my hands.

    Will report in a week or less if I'm better. I'm hoping it is the med so it will stop and fast! The soles of my feet were also hurting. Gosh!

    Strike out!
     
  2. AndyPandy

    AndyPandy Making the most of it

    Messages:
    1,470
    Likes:
    6,612
    Australia
    Sorry to hear it hasn't worked out for you. :( Hope the pain and other symptoms resolve quickly.
     
  3. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    Thanks Andy! I'm that rare bird that can't tolerate many meds. Hoping this pain exits swiftly.
     
  4. AndyPandy

    AndyPandy Making the most of it

    Messages:
    1,470
    Likes:
    6,612
    Australia
    We are birds of the same feather!;)
     
    Misfit Toy likes this.
  5. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    Good, then I don't feel so alone!
     
    AndyPandy likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,878
    Likes:
    8,178
    australia (brisbane)
    Your not alone.

    I had several attempts at valcyte and made those attempts because after stopping the valcyte I had a week or two of feeling better than normal.

    dont ask me why but eventually on an attempt I just didn't feel crappie on it.
     
    Misfit Toy and zzz like this.
  7. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    I'm feeling so worn out. After 2 nights of no sleep due to pain and some sort of sensitivity to temperature, I'm anxious (heart flying) and burned out.

    This was 1/16 of a pill.

    I'm so tired of trying. The sickness, pain and because of something I took.

    All through the night, I thought to myself...just live without trying anymore. Give in to it. Because the ups and downs and side effects that stick around for a bit due to my messed up methylation is too hard on me.
     
    L'engle likes this.
  8. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,323
    Likes:
    21,471
    Albuquerque
    @Misfit Toy Keep us posted on whether stopping Valcyte helps with the pain.
     
    Misfit Toy likes this.
  9. AndyPandy

    AndyPandy Making the most of it

    Messages:
    1,470
    Likes:
    6,612
    Australia
    It sucks when the very things that are supposed to help cause us more problems. :( Thinking of you and hoping these side effects resolve soon.
     
    charlie1 likes this.
  10. Tammy

    Tammy Senior Member

    Messages:
    1,070
    Likes:
    1,401
    New Mexico
    Does the thought of giving yourself a break make you anxious.....I mean do you feel like you have to do something to treat yourself no matter what. Just asking because for so long...........it was almost an obsession with me...........I felt like something was lurking in the shadows if I wasn't trying something..........and also felt like it was a defeat.....like I was giving up. Don't feel like that anymore...................when I get to the point where you are now........I give myself a break and pick it up later when I'm good and ready to. No worse for ware from giving myself a break.
     
    Last edited: Mar 3, 2015
  11. L'engle

    L'engle moogle

    Messages:
    1,559
    Likes:
    2,339
    Canada
    Yeah, I'd take a break from trying treatments if it is that draining and stressful. It is so wearying, the side effect cycles of everything. Hope you can sleep.
     
    AndyPandy, Misfit Toy and Tammy like this.
  12. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    That's what I've done - partly because there are hardly any treatment options in the UK, but also I needed a break. I think we can end up putting a lot of pressure on ourselves to try to fix our bodies... I sometimes feel that if I don't try to find the answer then I'm slacking, especially when I observe how many things others are doing.

    Yet it takes a lot of strength to go through the side effects of trying different treatment options. I also think it takes a lot of emotional strength to sit back or lie back and do nothing... And to truly be okay with that choice.
     
    charlie1, zzz, Sidereal and 3 others like this.
  13. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    Yes, that's exactly it. I feel like I'm giving up if I don't try something. When you're feeling crappy and awful, you also feel desperate. I guess you could say that's how I was feeling when I started Valcyte.

    I also feel pressure from people. People that have good recommendations and intentions and also go off of how they do on something. Because they're doing well they feel like other people like myself should be doing well on the same thing. I can't take that anymore and I need to back away from that kind of advice.

    But at the end of the day, it's my fault for caving in and trying it and wanting to keep trying new things. I need to realize that my body doesn't like new things. My body can't deal with a lot of the stuff that we're supposed to take.

    Ever since I can remember, most medicines just do not jive with me.

    @Tammy -you got it right!

    Thanks everyone for chiming in. Will let you know as I go along.

    @CantThink -it sure does take a lot of strength to sit back and do nothing. It's so hard for me. It's that overly motivated personality that I have going on that gets me into trouble.
     
    Last edited: Mar 3, 2015
  14. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    Sometimes I think:

    Right now my body just needs time to just 'be' - without added interference or strain.

    I know it probably sounds nuts or cliche, but I've had some relief mentally from doing so as it's relieved a lot of pressure from expectations and disapointment. I know if my body reacts to a new med, I then have my usual sickness plus the side effects, and that can be too much to bear!

    Over the years I've had improvements through periods of doing nothing, so in a way doing nothing (for me) is sometimes actually doing something!
     
    Bessie, Misfit Toy and Tammy like this.
  15. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    Feeling better. No more intense hand pain in the middle of the night! I was dying from pain. Clearly I can't take antivirals.
     
    maryb, SDSue, charlie1 and 5 others like this.
  16. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    Here's something interesting...off of it, I feel better. I have had more energy than normal. But, I also started progesterone. Something has been better since stopping. BUT...I felt like death on it.
     
    AndyPandy likes this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,878
    Likes:
    8,178
    australia (brisbane)
    Sounds abit like me minus the progesterone.

    I felt horrid on valcyte and would last 2 weeks and have to stop, shortly after i would feel better than before starting. This made me keep going back for more. I tried a couple of times like this before i was able to tolerate it and improve on it. Maybe the short courses on it over time do help lower viruses enough so that i could tolerate it.

    Taking valcyte again is like lining up to get punched in the face again lol, when you have rested from its effects and feel brave enough, maybe think about trying it again for say 2 weeks and wing it from there.

    its a hard call, good luck.
     
  18. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    @heapsreal ...why does it make one sick? die off or side effects? Gosh, I was only on 1/16th of a pill. I had to go on fentanyl narcotics to kill the pain.
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,878
    Likes:
    8,178
    australia (brisbane)

    I dont really know. I guessing it must stir the viruses up. They dont kill viruses directly but they do work on the virus and obviously doing something to them the viruses dont like. I think alot of the viruses probably hide out in the nerves system and the brain which one would think could cause pain.

    All we know is its common.

    you have had problems with other avs too??
     
  20. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,621
    USA
    @heapsreal --I have problems with them all. This one messed with my temperature...body temp. I had awful insomnia and pain. Plus crying daily. A mess on it. How does one know if this would stop? I mean...to stay on something that may make you feel better later, but how to deal with the meantime. When something messes with my sleep...it's too hard to tolerate for me.
     

See more popular forum discussions.

Share This Page