My Name is Brent and I'm just starting my blog entries here on PR. I intend to use this as a vehicle for information about my use of Valcyte which is starting today...
A little background for me: I came down with a viral infection late in 1989 and was later diagnosed with post-viral fatigue syndrome that has since been deemed ME/CFS.
I did a 6 month regimen of Valcyte back in 2008, which worked very well for me. Led a significantly improved lifestyle for about 18 months until I crashed hard during the summer of 2010. Since then, have been trying other methods to try and control my symptoms without any resolution, so I've convinced my Internist to restart me on the Valcyte. Should also mention that I was diagnosed with a mild case of POTS back in May of 2011 - am currently on Florinef 0.1mg daily for that. Noted on Dr. Lerner's website that Valcyte may help resolve this problem as well.
Last time around, I used a voice recorder to document my experiences with the drug, but haven't ever transcribed it to text - might get around to it some day and post the entries here. This time around, I plan on posting to this blog so that others might benefit from my trials and tribulations.
One of the tools I plan on using during this process is the activity scale that is used by PR in our profiles:
- 0 - Bedridden constantly
- 1 - Mostly bedridden
- 2 - leave house once a week, concentrate 1/hour a day
- 3 - leave house several times/week, two hours work/activity at home a day
- 4 - 3 to 4 hours of work/activity a day
- 5 - four to five hours/activity a day
- 6 - six to seven hours/activity a day
- 7 - able to work full-time but with difficulty
- 8 - near-normal activity level but still symptomatic
- 9 - normal activity level, mild symptoms
- 10- fully recovered
Another item to mention: I am planning on dosing differently this time from last time. In 2008, I used a copy of the Montoya preliminary study to guide my treatment (900mg twice daily for 3 weeks, then once daily for the remainder of a 6 month period). That treatment plan ended up in my having to take 6 weeks off from work and shaving my head (couldn't raise my arms above my shoulders - couldn't wash my hair...).
Can't do that again due to issues with my current employer, so I'm going to try a variation of Dr. Lerner's treatment plan and begin with a low dose. Starting with 450mg daily until I can handle more and increase slowly until reaching 1350mg daily. Hopefully, this method won't require me to take off work as I can't afford to do that.
My Internist has asked that blood work be done every 4-6 weeks and had me do a CMP and CBC w/o diff yesterday prior to filling the script. I plan on reporting trends in my blog posts.
One thing to note about Valcyte -> it's expensive as hell! This first month of partial dosing has fulfilled my entire annual deductible for my family's insurance ($2,800). Thankfully, the rest of the year should be much more reasonable.
If you have any questions about how things are going for me, or about Valcyte in general, feel free to comment and I'll write back as soon as I'm able.
Thanks for reading!!
=== BY THE NUMBERS: PREDOSE ===
Weight: 261.0 lbs
Activity Level: 4-5, depending on the day
Current Dosing: Predose
Lab values of note: None