Valcyte: The (Slightly) Scary Adventure Begins

(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!

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7 thoughts on “Valcyte: The (Slightly) Scary Adventure Begins

  1. Very interesting-I would be interested (really) to know what the specific BB warning is for Valcyte-I’ll have to lookit up. I am curious about this as, while not unheard of, having a BB warning for a drug that is fairly new and (it looks like) specifically developed to treat the condition that it is being prescribed for. I am still waiting to get my labs-the ones that you recommended completed; what I do think about a lot is the Parvovirus. Back in the late 70’s in Virginia, there was a massive Parvo outbreak, and this was also when I was working at Blue Cross Animal Hospital in Merrifield. There would be weeks and weeks when we would have upwards of 100 dogs sick with this virus-I got to the point where I could tell when a dog was going to die from it or not-right when they were admitted, and I could also tell when a “healthy” dog had it-something about the way that they smelled-very ketone-y. But I wonder, because that is also around the time that my arthritis and migraines started to get (and have stayed) much worse, as well as easily getting “run-down.”

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    • Hey Dawn!
      From what I’ve been told and have read, human parvovirus B19 is not derived in any way from the variety of parvo that dogs get – they are same family, but different genus, and canine parvo only affects canines (wild & domestic) and occassionally felines.
      But Parvo B19 is usually a virus we pick up as kids – most people in the US will have had it by the time they are 10.
      I’m very very curious as to how all your labs turn out!

      Valcyte appears to have a bunch of warnings associated with it. Check rxlist.com for all of them. Dire stuff. I really, really shouldn’t have read the medical professional version of the drug warnings page.
      But I’m sticking with it anyway.
      And although this is my blog and so holds little if any legal weight, I’m hereby releasing Dr H. Phillips, the prescribing physician, from any responsibility resulting from adverse effects or events associated with her prescribing the medication, Valcyte, for me. I am fully cognizant of all the possible adverse effects and take full responsibility for any adverse effects resulting from taking Valcyte. And I fully intend to put a hard & legally binding copy of this release of liability into her hands at my next appointment. Until then, this will have to suffice. – signed, Kelly B Collins

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  2. Ash,

    I just found this entry of yours on Google with Valcyte search. https://wolfdreams.wordpress.com/2011/02/10/valcyte/

    First off, I love your writing style. You write with lightness and a touch of humor about a serious subject.

    I’m also interested in your experience with Valcyte. Could you tolerate it and was it effective?

    I recently stopped a 3 month trial of high dose Valtrex to treat my fibro symptoms. The drug made me dizzy and gave me mild headaches but I hung in for the duration… and unfortunately I didn’t feel any better.

    I’m looking for a doc who can assess my viral lab scores… to let me know whether they indicate active viruses or just past infections. Do you know anyone who may be able to help me understand the test scores?

    I hope you’re doing better in 2012 than in 2011… and look forward to hearing from you.

    Sky Chaney (male)

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    • Hi, Sky!

      Thank you for visiting my blog & your kind comments!

      I’m sorry for the delay in getting back to you – there’s been a lot going on in my life of late. I’m unfortunately not doing better, although for a while there I was.

      The Valcyte has been the only thing to really help at all in many years. It took about 4 months to really start to feel a difference, and it was mostly with reduced post-exertional malaise, and then slowly with a bit more out of bed time.

      I have pretty severe CFS/FMS, and am pretty much housebound. When I started on the Valcyte, I was seldom even out of bed, and even then, just for a few minutes at a time.

      I stayed on the Valcyte for 14 months, at 2 – 450mg tablets a day, taken together with a high fat meal or else with my fish oil supplements, as it needs fat to be absorbed properly. They are supposed to be taken together, and I found I needed to take them in the morning or they caused insomnia.

      After 14 months, I developed leukopenia (low leukocytes, a type of blood cell), which is a common side effect. I wrote about this here:
      https://wolfdreams.wordpress.com/2012/04/12/risky-decisions/

      After a month off, during which my epstein-barr flared (terrible sore throat & swollen glands, extra tired) & herpes flared & almost erupted, my cell counts returned to normal, and I re-started the Valcyte at one 450mg tablet a day.

      Within a couple days, the flares subsided, so I’m staying on this dose for now.

      As for finding a doctor… that’s always hard. Patrick, a fellow blogger has one on his blog, on the right hand side:

      http://quixoticmeblog.blogspot.com/

      There are also several groups that keep lists of doctors – just do a google search for “fibromyalgia good doctor list” or “me/cfs good doctor list.”

      Best of luck to you!

      Ash

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  3. Hi Ash,

    I’ve had CFS for 10 yrs. With pacing, I am able to work about 7 hrs/week (not enough to support myself, but I must have SOME income.
    My new doc wants to put me on Valcyte. My NRT practitioner is concerned. Thinks that my body has some other priorities to deal with, and that the Valcyte would be toxic to my body.
    Just curious as to how its going for you 2 years in.

    Thanks!
    suzanne,
    Boston

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  4. Hi there. I’ve just put on the same medication for very EBV, Parvo and HPV6. How has it worked for you yet? Any side effects question after reading your blog and a bit nervous about taking it

    Like

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