Wow...since I posted my last blog about starting Valcyte, I've received a lot of e-mails expressing support, concern, and requests for more information. Thank you all for your notes. I'm reminded once again of how grateful I am for this virtual community of people with CFIDS. I don't know anyone in my local area with CFIDS (though I know there must be plenty of them out there...), and it means so much to be able to "talk" things over with others who fully understand.
I had a few instances of cold feet this weekend (figuratively and literally, with my usual weird temperature fluctuations!). Bottom line is that I have embarked on a course of treatment with a lot of uncertainties, and it's a little scary.
My doctor commented that most clinical experience with Valcyte has been with AIDS patients and organ transplant patients, both of whom have seriously deficient immune systems. The risks and side effects known for those patients might be completely different for me. Yes, I'm ill, but with a mostly overactive immune system and otherwise healthy organs. Who knows how I'll react? Ultimately, I made my decision based on my doctor's support...which was based in large part on her experience with me in the past. She doesn't really know what will happen either.
I don't want to persuade others to try this treatment based only on my experience because there could be significant risks involved.
Here are some of the sources that my doctor and I reviewed:
Virus-Induced CN Dysfunction Website
(a different way of looking at some cases of CFIDS; Dr. Bell told me years ago that he preferred to call the type of CFIDS that Jamie and I have Post-Viral Dysautonomia - same sort of thinking)
I was particularly interested in the page on this website about Testing. In my case, all of the labs used by my insurance company use a fairly useless internal index to report HHV-6 antibodies, so we decided to forgo the test. This page also lists the lab that Dr. Montoya uses for the Valcyte trials at Standford, as well as the link for the upcoming trial (which I would have tried to join if I lived in San Francisco).
HHV-6 Foundation Website
More good information on current research on HHV-6 in CFIDS, including links to Dr. Montoya's research abstract and a full text summary of recent presentations on the topic.
PDR Listing for Valcyte
Here's the listing for Valcyte from the Physician's Desk Reference. This is where it gets scary, but many drugs have long lists of side effects and warnings. My own doctor's intrepretation was important to me at this point.
Well, I hope that helps others to learn more of the facts.
As for me...well, so far I have no idea if it's working or not. I felt pretty good on Saturday and moderately crashed on Sunday. That could easily be more of the same pattern I've been stuck in since January 1 or it could be the start of my worsening due to the drug which would mean that it's working. Impossible to tell yet. I'll keep you posted!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Sue,
ReplyDeleteI've just read your posts on taking Valcyte. Good luck and I'm hoping very much that it works for you.
I have my fingers crossed for you. I think we know within 6 months if Valcyte works or not and either way pwcs stop taking the drug then and so far none have had a bad reaction to it. I'm not surprised we need something heavy duty to try to zap the bugs in us. This is a serious disease. I'd like to know how much Valcyte you take and how you figured out how much to take. Thank you!
ReplyDeleteFogggygyrl
I am in week 2 of Valcyte. It's been causing me large muscle spasms, and I've thrown my back out, something I don't usually do. I wonder if it's from the cell death.
ReplyDeleteConsidering Valcyte. Eager for info. Please post what can be shared on subject. Wishing for a cure. Been to the supposed best, tried it all, even experimental. Know it's viral from living with it. Thinking this may be the answer. Ten years later, still not hiking the mountains, but expecting to...once again! Smiling. My best to all, and much love to those trailblazers, trying the Valcyte and sharing on it.
ReplyDeleteAlso considering Valcyte. I would be paying cash out of pocket for it. Does anyone have input for the lowest cost. (if I do the 1800mg/day for 3 weeks it is big $$$)
ReplyDeleteBlessings & Health to You All