Monday, March 12, 2007

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!

9 comments:

  1. Anonymous3:24 PM

    Thanks for keeping us posted on the Valcyte, Sue. I just started last week but I am following the Montoya protocol. I have been bedridden with severe, progressive CFS/FMS for many years. I'll let you know how I fare too. So far, there's no change.

    fogggygyrl

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  2. Congratulations, fogggygyrl! I'm glad to hear you're able to try anti-viral treatment. Since your CFIDS is severe and you're using the full dose, you should be prepared for a severe worsening for the first month or two, but hopefully, you'll start to improve after that. If you haven't already, check out the message boards at immunesupport.com. Look for the message threads on Valcyte. Hearing about others' experiences is invaluable. Good luck! Let me know how it goes.

    Sue

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  3. Anonymous3:18 PM

    Thanks Sue and anonymous, I'm going to post a link to your blog on the Phoenix Rising CFS newsletter.

    Cort

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  4. Anonymous10:16 AM

    hi sue!
    hope you are doing well...

    i am on week 6 of valcyte and also have mild symptoms. because my fog is so bad i also am not sure if i am worse than before a started (but i think a little).

    i would be very interested to know how you are doing now....

    thank you
    all the best
    sue

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  5. Sue -

    This was an older blog entry that you read from March 2007. I only took Valcyte for 2 months, then switched to Valtrex. For the full story, plus lots of information and links on CFS and Valcyte, please take a look at more recent blog entries at www.livewithcfs.blogspot.com

    Best of luck to you!

    Sue

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  6. Hi Sue,

    I am a CFS sufferer for over 20 years. My doctor is considering putting me on the Montoya protocol.

    I was just wondering.... You mention that the Valcyte prescription is expensive. Exactly how expensive is it? This would help me understand how this protocol will affect my pocketbook.

    Thanks!

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  7. Hi, Elizabeth -

    It's been awhile since I took Valcyte, but I think it costs roughly $1500 without insurance and $200 with my insurance, per month (I may be a little off on those estimates).

    This was an older blog entry that you read from March 2007. I only took Valcyte for 2 months, then switched to Valtrex. For the full story, plus lots of information and links on CFS and Valcyte, please take a look at more recent blog entries at www.livewithcfs.blogspot.com. here are two entires in particular that might be helpful to you:

    http://livewithcfs.blogspot.com/2008/01/treatment-update.html

    http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html

    Good luck - I hope that Valcyte helps you.

    Sue

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  8. My doctor has prescribed Valcyte 450 mg/1x daily for me. I have fibromyalgia and 2 infections in my system that have affected my immune system. I get sick very easily (asthmatic) and knocks me out. In addition, I have sleep apnea (diagnosed in june 08) and also a slipped disk (L5-S1) which is triggering my sciatic. I work on my feet (make up artist) and all in all, I feel terrible. So I will get this new med and start taking it in about 2 weeks time as I am on antibiotics now and need to finish those. Can anyone share any experiences they have had with fibro and this med? I am open to hearing everything as I think I need to touch base with people who are experiencing this pain, discomfort and sometimes depression that hits with these situations. I look forward to hearing from you!
    Have a blessed day,
    Evie

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  9. Hi, Evie -

    This was an older blog entry that you read from March 2007. I only took Valcyte for 2 months, then switched to Valtrex. For the full story, plus lots of information and links on CFS and Valcyte, please take a look at more recent blog entries at www.livewithcfs.blogspot.com. here are two entries in particular that might be helpful to you:

    http://livewithcfs.blogspot.com/2008/01/treatment-update.html

    http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html

    For more on fibromyalgia and Valcyte, try the message boards at www.immunesupport.com.

    Good luck - I hope that Valcyte helps you.

    Sue

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