Valcyte Update

Lots of people have been asking me about my trial of Valcyte, so I guess it's time for a quick update. I've been avoiding focusing on it too much mainly because there's not much to report yet. I'm still not sure whether it is going to work for me or not.

I have now been on Valcyte (at a low dose of 450 mg per day) for 8 weeks. I'm thinking of this week as something of a turning point. Most CFIDS patients who've tried Valcyte report a worsening of symptoms beginning at around week 2 and lasting until week 8 or so. The general theory is that if Valcyte is going to work for you, you should experience this worsening as a sign that the virus in your cells is being killed off by the medication and is entering your blood stream.

So, did I experience a worsening of symptoms in the first two months? I'm not sure. I've certainly had my share of bad days lately, with a few good ones thrown in, but it's hard for me to tell if this is just the typical ups and downs of CFIDS or the result of the Valcyte. Many people with CFIDS who've taken Valcyte get so much worse so suddenly (most advise to plan on being bedridden for at least a few weeks) that they don't understand how I could not know for sure. There are two factors that make my case unique, though:

1 - I'm on a much lower dose than most (the official Montoya trials use 1800 mg per day for the first 3 weeks, then 900 mg per day for the rest of the six months)

2 - I started off in better shape than most. Understandably, Montoya chose some of his sickest patients for his first trial. Many were bedridden or similarly incapacitated. I function at about 40-50% of what I could do before getting CFIDS - quite impaired but considered "mild to moderate" for CFIDS.

So, for these reasons, it seems logical to expect my reaction to Valcyte to be less dramatic than what has been reported so far in most patients.

This next month will be the real test for me. If Valcyte is working, then I should begin to see some gradual improvement in this third month. If I continue to function at the same level, then it's likely this particular anti-viral won't work for me. So, I'm getting my labwork done this week and will refill for one more expensive month before deciding whether to continue. Don't worry - I'll keep you posted!