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Valcyte - 1 Month / 32 Days

Blog entry posted by ArgyrosfeniX, Feb 14, 2012.

Hello Everyone!

The past month has had its ups and downs, but there has been a fairly good trend in the right direction! Here's a list of some things I'm noticed / has happened since my last entry:
  • My neck's lymph nodes have reduced in size. The right one has been enlarged since I first contract the virus that brought me all of this. The left has been enlarged for the last few years. As with most of us, the sicker I've been, the more swollen and painful... This is an encouraging sign!
  • The last time I was on the Valcyte, there was an instance where I took an Ambien and had it last for 18 hours. Well, that memory was lost and so, it apparently required repeating. This time it was a Unisom and it lasted 19 1/2 hours before wearing off (that's nineteen and one-half hours). Eek!!
  • Since last week, there have been some symptoms of a cold that have been dragging me down. Occasional cough, runny nose and minimal sore throat. Frustrated and cautious as Valcyte supposedly makes us more susceptible to bugs. :-(
  • The past week or so, I've had to lie down after taking showers again. Haven't had to do that very often since starting the fludrocortisone (Florinef). Not sure if the Valcyte is messing with my body's ability to use the Florinef or not. Seems to be rather variable on a day to day basis.
  • Continuing to have problems with insomnia. Have a plan to block up the window with some foam insulation, but haven't gotten teh energy to do that just yet. Maybe this weekend will work for that.
All in all, it has been a fairly positive first month of this. Hoping the trend continues. Wish me luck!! :D

=== BY THE NUMBERS: ONE MONTH ===
Weight: 260.6 lbs

Activity Level: ~7 depending on the day

Current Dosing: 900mg Daily in AM

Lab values of note: (Having my second draw tomorrow.)
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
    Glad the update was helpful for you Justy!

    I love having the improvements, but my job is over-extending me - making it difficult to make any progress. I'm actually looking for a new job right now. I think when my boss stated that he was being "very understanding of your condition", it was all over. Still work here, but hopefully not for long.

    As I write this, I'm in the first few hours of a new crash brought on by my job. Gotta get out of here before I end up in the hospital!
  2. justy
    Nice one! thanks for the update, I have also have swollen neck lymph nodes for about 3 years now - the one on the back of my head goes up and down but never dissapears - i've always felt that this was due to a continuing virus.
    I hope the improvements keep up.
    Take care, Justy.