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Valcyte: Five Doses Down

Blog entry posted by ArgyrosfeniX, Jan 18, 2012.

Hello Everyone,

It has been a few days since the last update, and boy, has it been weird!

My body seems to be really confused as to what is going on. There are periods where the brain is feeling completely aware and focused - then 5 minutes later, can barely remember what I'm doing. There are periods of zoning out and lack of attention span. Unfortunately, that needs to change if I plan on doing any driving...

The body is confused too. Feeling completely energized and fired up - then only having enough energy to do something for 1-2 minutes. Was feeling really good 2 days ago when I got into the shower to get ready for work and ended up breathing like I had run a marathon while washing my hair.

My insomnia seems to have gotten better, but only because of a need for increased sleep.

The biggest concern seems to be that everything changes so rapidly right now. A few months ago, I crashed while at work - that took about 5-6 hours. That seemed really fast at the time. Things seem to change from minute to minute right now. Very difficult to pin down what is going on.

Not sure how much longer I'm going to be able to work before going on short term disability... I have a very sedate job, but can barely do it right now and it is supposed to pick up some in the next week or two. One thing that has been determined - if the short term disability / time off occurs, I'll boost the dosage all of the way up to the final level. That way, there will only be one period of taking time off from the job. Can't afford to take time off if it can be helped.

Currently at 450mg in the mornings. Will be taking my sixth dose in about 2-3 hours when I get home. Whee!

Also, if anyone has any thoughts of something they would like me to keep track of, please let me know asap. ;)

=== BY THE NUMBERS: DAY 5-6 ===
Weight: 261.6 lbs

Activity Level: 3-4, depending on the day

Current Dosing: 450mg daily in AM

Lab values of note: None
ArgyrosfeniX

About the Author

Living with ME/CFS since the age of 16 (1989). Was persistent enough to get three Associates Degrees and get married through it all. Working hard to keep going for as long as I can before becoming bedridden. Current treatment plan is to use Valcyte for 2 years starting January 13th, 2012, then possibly switch to Valtrex for an indefinite period. "Here I am trying to live, or rather, I am trying to teach the death within me how to live." ~ Jean Cocteau
  1. ArgyrosfeniX
    Thank you so much for sharing your experience with this second round of Valcyte as it unfolds! I'm sure I'm not alone in following your posts with great interest and gratitude.
    You're very welcome! I find that I'm preferring using a blog like this rather than a forum thread - it's easier to keep track of the posts that are most important without everything devolving into tangential topics.

    Best wishes robinsonsb!
  2. robinsonsb
    Thank you so much for sharing your experience with this second round of Valcyte as it unfolds! I'm sure I'm not alone in following your posts with great interest and gratitude.
  3. ArgyrosfeniX
    hello i dont have any advice i hadnt heard of the medication before...at first glance i thought it was the generic for valtrax i think thats what is called valcyclivir or something like that..i get fever blisters sometimes and have taken it and it makes my mouth and face numb sometimes..

    anyways i just wanted to say that i hope that this works great for you and that you respond great with it....at least your getting some rest...insomnia is a very hard thing to live with....

    maybe someone who has tried the medication your taking will post on here and give you their thoughts and experience with it..

    take care and your in my thoughts and prayers to feel great : )
    Hi Hurting,
    Valcyte is a stronger form of the antiviral Valtrex. I've taken it before and it worked well for me. The plan this time, is to take it for a longer period and then maybe take Valtrex later down the road to prevent relapse. Thanks for the comments!

    Hi Arg, i just wanted to write you a note to say that i am keeping up with your blog with much interest. No chance of antivirals here in the U.K, but i always follow peoples experience with interest.
    I am amazed that you are managing to work with an activity level/score of 3/4, i am at about that level, but am mainly housebound and certainly couldnt work outside the home, i also dont drive myself anymore as i feel too vulnerable when out alone.
    good luck with this all, Justy.
    I am lucky to have one of the easiest jobs in the world for my profession (nursing). I am the only staff member on at nights so I can pace myself and take breaks as I need them (mostly), as long as the work gets done. I am usually capable of getting the work done, but not always. That's part of the reason my boss is supportive of my taking the Valcyte -> to make me into a more productive employee.
    Most of the time, I feel like I'm only doing a few hours of actual work - it is my presence that they are truly paying my wages for thankfully. Please let me know if you have any questions Justy - I try to share as much as possible so others can gain from my experiences. :D

    Best wishes all!
  4. justy
    Hi Arg, i just wanted to write you a note to say that i am keeping up with your blog with much interest. No chance of antivirals here in the U.K, but i always follow peoples experience with interest.
    I am amazed that you are managing to work with an activity level/score of 3/4, i am at about that level, but am mainly housebound and certainly couldnt work outside the home, i also dont drive myself anymore as i feel too vulnerable when out alone.
    good luck with this all, Justy.
  5. hurtingallthetimet
    hello i dont have any advice i hadnt heard of the medication before...at first glance i thought it was the generic for valtrax i think thats what is called valcyclivir or something like that..i get fever blisters sometimes and have taken it and it makes my mouth and face numb sometimes..

    anyways i just wanted to say that i hope that this works great for you and that you respond great with it....at least your getting some rest...insomnia is a very hard thing to live with....

    maybe someone who has tried the medication your taking will post on here and give you their thoughts and experience with it..

    take care and your in my thoughts and prayers to feel great : )