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Valcyte 2013- 1 month update

Blog entry posted by RUkiddingME, Feb 2, 2013.

Hello Gang;

I can't believe I've already been on Valcyte for one month. I am now down to 900 mg once daily (with meal) and still having no problems. Sometimes I wonder if the pharmacist messed up and gave me suger pills because I'm tolerating this way better than I ever dreamed of! :thumbsup:

I had my last weekly labs done on Sunday and haven't heard from my family doctor which means everything is looking good. Now I don't need to be retested for another month. This week I also had a brain MRI to check for viral encephalitis. I will post results when I hear back.

The only thing I have noticed on the Valcyte, during the three weeks of high dosage was a few "urgent" trips to the bathroom. Today I have left hip joint pain and I did read that some people get joint/myalgias on the Valcyte. My cognitive overload doesn't seem as bad as I was able to have breakfast out (in a small quiet place) with my hubby yesterday and I was able to have my eyes open in the car for the short drive home without feeling like I was wearing " prank googly eyes on springs" glasses :nerd: like I usually feel with any mental stimulus. I also haven't had one of my "coma" days in a while. My mood has not been affected and am still my bubbly old self and hope it stays that way for my family's sake!

I really hope I'm a responder. I keep telling myself this is going to work, over and over again. I'm just so grateful to finally have the opportunity to try the darn stuff!

Until next time... keep the faith
RUkiddingME

About the Author

My 2013 Valcyte experience
  1. jimells
    Thanks for writing this. Every person on this forum who writes that they are receiving these kind of treatments is one more arrow in my quiver for dealing with doctors who insist there are no treatments to try, that I should just go home and quietly wait to die.
    Marianarchy and RUkiddingME like this.
  2. Marianarchy
    Thanks for the update. I'm thrilled to hear you haven't have problems with it! :)
    RUkiddingME likes this.
  3. Little Bluestem
    It is nice to hear that someone is not have negative side effects from a drug. Often people post when they are having problems because they need help dealing with them.
    RUkiddingME likes this.
  4. RUkiddingME
    Thanks Heaps, yep I'm certainly doing at least six months unless something comes up with my blood tests but I'm certainly going to give this a fair try.
    heapsreal likes this.
  5. heapsreal
    give it months before u make a judgement, 6 months for me then i new i was a responder.
    good luck.
    RUkiddingME likes this.