I recently hit the 2 year anniversary since I started taking Valcyte for my ME/CFS. The post I wrote detailing my decision to start on Valcyte, a pretty risky drug as drugs go, is still one of the most visited posts on my blog. That post was written Feb. 10, 2011: Valcyte: The (Slightly) Scary Adventure Begins
A number of fellow patients have asked me about this, often weighing the difficult decision to give it a try or not, so I’d like to share my experiences in a more cohesive fashion. While I’ve written about it periodically over the last couple years, those are mostly short comments thrown in here and there.
Has Valcyte helped? Yes, absolutely! I found out just how much when I had to go off it for a month.
Is it worth the risk? Only you & your doctor can decide that, but I have no regrets. I did have some complications with low cell counts (see below), but given where I was when I started, physically as well as cognitively, it has been worth the increase in quality of life.
When I think back to where I was pre-Valcyte, I remember the last few minutes of the conversation I had with my PCP about it. I had requested Valcyte based on preliminary studies coming out of Stanford, and she agreed to a trial, but she was worried (and going out on a limb for me – she’s a PCP in a big practice, and while she specializes in fibromyalgia, this was a whole ‘nother thing entirely).
As she put it, Valcyte has a “black box warning” on it by the FDA (that’s a bad thing), and is a “medicine of last resort.” To which I said something like, “We’re there. I’m circling the drain, and we have to do something. Now. And I’m not depressed, but to put it simply, I can’t go on living like this. I just can’t. It’s pointless.” She assured me she understood, and sent the script to the pharmacy, making sure I understood we’d be doing labs very often to be sure no complications come up.
Here’s a collection of my observations, as the months passed:
May 19, 2011 (3 months into treatment):
We’re giving the Valcyte a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing.
It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop.
July 1, 2011 (4 1/2 months into treatment):
Valcyte continues to help, increasing my cognitive functioning somewhat, making me more alert & aware. Physically, it’s decreased my recovery time from Post-Exertional Malaise from our weekly grocery shopping trips to 1 or 2 days instead of 3 or 4 days – a big improvement, as these things go. I’m still very sick, still bed-bound most of the time, but I at least want to do more and interact with the world more.
April 12, 2012 (14 months into treatment):
Risky Decisions, or Valcyte: the Very Scary Adventure Ends
The entire post is about Valcyte, detailing the crash of my cell counts, and how common I found out this was – thanks to the patient community. But in everyone I connected with, their counts recovered, usually quickly, and I’m pretty sure they all resumed treatment.
The Valcyte helped me, mostly by reducing my PEM, and improved my cognitive function somewhat. It was the only thing to really help at all in the last 5 or more years.
The (more than slightly) scary Valcyte adventure has ended, for now. Once my blood counts come back up, I hope to re-start it, likely at a lower dose.
We make these risky decisions all the time, we patients. Some have said they’ve “donated their body to science” while they’re still using them. I think that’s a good way to put it.
May 27, 2012 (15 months into treatment):
I’m happy to report that over the course of a month, my cell counts recovered. During that month, though, I went thru a terrible EBV flare, and the HSV which lives in my back erupted for the first time in a decade or so.
My doctor gave the okay to re-start the Valcyte at 1 tablet (450mg) a day instead of 2 a day, and after about 2 weeks back on it my cell counts were fine, and the EBV & HSV flares subsided for the most part.
Then, Now, and EBV
I resumed taking the full dose of Valcyte after a month of okay labs.
However, a couple months ago my LLMD decided I might benefit more from Famvir than from Valcyte, and as she pointed out, my EBV titers never came down.
However, despite having very high titers to EBV & HSV 2, the number of sore throats and swollen glands and viral flares definitely improved greatly from taking Valcyte.
So at this time, I’m taking a half dose of each – one tablet of Valcyte and one tablet of Famvir – as we wean me off Valcyte and onto the Famvir. The goal is to avoid a flare in the many viruses living happily in my body. Since I have a fair amount of Valcyte on hand, and want to use it up, it will take a couple more months before the switch is complete.
I cannot tell you what to do.
I know that faced with all the “black box warnings” that Valcyte carries, it’s scary as hell. But so far as I know, a fair number of ME/CFS patients have been trying it, and mostly reporting good experiences, with the occasional blip in cell counts.
It’s hard to define what the difference is, exactly, in me, pre-Valcyte versus now, but my mother may put it best when she says I “simply seem more alive.” It’s something she noticed after about 3 or 4 months, and even more so as time went on.
I’m much more cognitively aware, much more able to spend time on the web, connecting with the patient community, and keeping up with what’s going on in the world.
And in an illness we call the “living death,” that’s definitely a good thing.