(Interested in how this adventure turned out? See my 2nd anniversary recap to find out!)
Yesterday evening, I picked up my prescription for a new medication, Valcyte. Valcyte is an anti-viral, similar to Valtrex, which I’ve taken for years. Both are effective against all the viruses in the Herpes family, and there are a lot more of them than you’d think – not just the Herpes that causes cold sores, or the one that causes genital Herpes, but there’s also HHV-6 (Human Herpes Virus 6) that causes a rash & mild illness in children, but also Epstein-Barr Virus (EBV) which is best known for causing mono, HHV-7, and I think even Parvovirus B19 is in the Herpes family. Big family, lots of viruses.
Most of the time, Herpes viruses are relatively benign – you get a mild illness, then develop antibodies against it, and while it continues to live in your body, it doesn’t continue to cause active illness, with exception of “outbreaks” of things like cold sores & genital herpes sores.
But in some people, people like me, who have CFS, the viruses remain in a more or less active state, causing the body to continue to pump out high levels of antibodies, in a continued attempt to get them under control. I’m not actively contagious for something like EBV, but my body is still fighting the war against the virus, so it’s as if I continually have mono. As well as a slew of other Herpes family viruses. And Lyme. My immune system is under siege by so many viruses that it barely makes any immune cells to fight other infections. We’re not 100% sure at this time, but it’s been proposed that XMRV somehow acts to “open the door” for these viruses to re-activate.
From the very beginning, my antibody levels to the Herpes family viruses has been about off the scale. For example, for EBV, my labs show I don’t have a new infection, but where a normal person would have antibody levels of between 1 and 60 as “normal,” and “high” would be 61 -100, my antibody level has been in the 3400 range. Yes, that is the correct number of zeros. Not just “high” – insanely high.
Valtrex is the antiviral I’ve been taking to attempt to get these levels down – if my body was less busy fighting EBV & Parvo & all the HHV’s, the theory is that I’d be less sick. But Valtrex hasn’t been working so well, and I keep getting more & more sick.
Enter Stanford, whose renowned doctors have recently done a study on folks like me with severe CFS who also have high levels of antibodies to the Herpes family viruses (most people with CFS do have the same high levels as I do). They decided to try Valcyte, which is, apparently, much stronger than Valtrex. You can read about it on their website. They call this condition I’m in VICD for “Virus Induced CNS Dysfunction.” And they’ve had some really good results, with patients who have been bed-ridden (like me) having much less fatigue & especially much less cognitive dysfunction (aka Fibro-Fog).
So, I decided I wanted to give Valcyte a try. In December, I stopped taking the Valtrex because that was recommended for those about to take an XMRV test – that you stop for a month. It turned out to be more than a month, due to the snow, the War On The Driveway, and difficulty with the lab I asked to draw the blood for the XMRV test kit refusing to do so – seems my blood is all mine so long as it’s in my veins, but once they draw it, they can’t give it back to me to send via Fed Ex to the lab doing the XMRV test. Finally got it drawn last week at the doctor’s office & off to the lab, and yesterday went in and had another lab draw blood to check my levels of antibodies to the Herpes family viruses & some other stuff.
At my doctor appointment last week, which was rather rushed as I had to hurry to get my blood in the hands of Fed Ex, Dr. P & I had a somewhat short conversation about Valcyte. I’d sent her the info from Stanford weeks ago, a she agreed to give it a try.
But, she’s kind of worried. 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.
I must say I was somewhat amazed last night to find the pharmacy had filled the prescription without a fight from my insurance company. They’ve been requiring pre-approval on almost everything these days. Then my amazement grew to speechless shock when I saw the amount the Valcyte would have cost, had insurance not covered it: $2546. That’s a big, big number! In fact, I don’t believe I’ve ever seen 4 digits on any prescription I’ve ever had filled. (And I got to ask, just why they fight over a $40 prescription and yet no fight over a $2500 one?!? No clue.)
Reportedly, it takes 3 – 6 months for any effect of significance. And in the meantime, I may have a Herxheimer reaction – this is when you feel much much worse at the beginning of treatment because all these little virus buggers cause a lot of toxins to be deposited into your bloodstream as they die off. I’ve gone through many Herx’s. My feeling is that, since I’ve been off the Valtrex for nearly 2 months now, my “viral-load” is probably very high, and probably one reason my headaches & osteochondritis (inflammation & pain in my ribs) & such have gotten worse recently. So I think I’m gonna start out slowly… instead of 2 a day, I think it might be best to start with 1 a day. And of course, I’m gonna run this by the doc, who I sense is not really terribly comfortable with putting me on a “medicine of last resort.”
Reportedly, the patients in the Stanford study had very few “adverse events.” And Dr. P. is very concerned with getting labs done on me frequently, so we can stop the Valcyte if anything “adverse” even starts to come about.
But like I told her, “We’re there.”
Let the adventure begin!