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Valcyte - Day 18

Blog entry posted by ArgyrosfeniX, Jan 30, 2012.

Hello again Everyone!

The past week was a blessing at work - busy, but of a light activity level. This next week is going to be the one to test me (and the Valcyte results) as we're going to be very, very busy... Wish me luck on making it through!!


I have 1 day left of the Valcyte after this mornings dose before I have to get some more. The insurance copay hasn't lowered by much since the last purchase, so I'll have to shill out about $850 clams for my next months worth. Thankfully, after that has been paid for, our family's deductible will have been met. This means that the rest of the meds for 2012 should be paid for entirely by the insurance company! YAY!! :Sign giggle:

I have noticed some additional (occasional) improvements. I've had a few more days where I've gotten periods of sleep longer than 4-5 hours, and last night, I almost felt refreshed when I woke for work! That hasn't happened in over a decade!! What I wouldn't give to actually feel refreshed after a good period of sleep...

One item to make mention of: Even though I've been having less problems with gorging myself during the day due to endless hunger (which is due to endless lack of energy), I seem to have been gaining weight since I started the Valcyte. Not sure if it is water weight, or something else. Hopefully, it isn't the trend of things to come ( I've gained about 4 pounds since the 13th).

Thanks again for reading! :D

=== BY THE NUMBERS: DAY 18 ===
Weight: 265.1 lbs

Activity Level: 6-7, depending on the day

Current Dosing: 900mg in AM
(I work nights and found that the Valcyte was making
me sleepy - so I take it when I get home from work.)

Lab values of note: No additional labs at this time.
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
    Hey Guys,

    Thanks for the comments!

    I enjoy hearing from you heaps, you are very active all over the site and it is a pleasure to read your comments.

    JuliaHugoRachel - Thank you for the luck, it is much appreciated... Did you find that you had any long-term negative effects from being on the Valcyte for so long? I'm looking forward to the one-year mark now! I hadn't heard about that particular improvement point - didn't take the Valcyte long enough last time to get there. :oops:

    Best Wishes All!!
  2. JuliaHugoRachel
    Good Luck with Your Valcyte Journey. Valcyte saved my sons life and bettered mine. He is now on long-term anti-virals, but was on Valcyte for 3 years. I will be on it for 3 years this May and will probably be transferred to another long-term anti-viral this coming summer. I've had this for 30 years, so treatment will be longer for me.

    We noticed a small improvement within 90 days, But the biggest imnprovements for us (and what I've heard from others I've interviewed) has come after the 1 year mark on the drug.

    Also, Roche Pharma has a plan to help you get the drug for free or cover your co-pay or deductible if you qualify (I think the cutoff is 50K per year-NOT SURE) Maybe you could get a refund?

    Godspeed.
    Julia Hugo Rachel
  3. heapsreal
    good luck dude, fingers crossed for ya.

    cheers!!!