I should mention that Valcyte is a prodrug for ganciclovir, which means that the body converts Valcyte into ganciclovir after Valcyte is absorbed from the GI tract. It is ganciclovir that does all the work. Before Valcyte was released, people (such as me) could get ganciclovir only through IV treatments, since there is almost no absorption of it from the gut. My initial treatment was seven weeks of IV ganciclovir. I started my ganciclovir treatment in April, 2001.
1) What dose of Valycte did you take (at beginning, middle and end) b/c I have heard many different dosing schedules. Does anyone know what is considered the standard dose?
Ganciclovir doses are exactly equivalent to Valcyte doses. In the beginning, I took 900 mg per day of ganciclovir in one IV treatment. Since this was done at a clinic, these treatments were five days a week, with the weekends off. As I later discovered from my own experience (and later from Dr. Montoya's reports) that Valcyte is a powerful immune modulator, the weekends off probably helped it work better in this area, and probably played a role in my dramatic improvement over the seven weeks.
A few weeks into the treatment, my doctor tried going to 1800 mg per day in two separated IV treatments. However, after a few days, my blood tests showed a number of lower blood counts. I stopped the treatment for a couple of days and the blood counts rebounded, and then I resumed the treatment at 900 mg per day.
After the seven weeks, I continued improving for about a month. Things leveled off then. Valcyte was released at the end of August, and I began taking it the week it was released. I took 450 mg twice a day. Occasionally, if I had a flare-up that I thought the Valcyte should be handling, I would take a two week break and then resume. This proved to be very effective, and I was able to use this even to get rid of other unrelated infections, which perplexed Dr. Anthony Komaroff when my doctor told him about this. Occasionally, I would go up to 1350 mg per day, as this seemed to help at times, especially if I were coming off a break. I was even able to tolerate 1800 mg per day, but didn't due this for long, as I found it gave me no additional benefits.
As for a standard dose, there is none, although dosing seems always to be between 900 and 1800 mg per day. Other than that, it varies by doctor. I determined my own dosing the last four years I was on Valcyte, as my doctors had no experience with this drug.
2) How long did you take Valcyte for? (weeks, months, years, etc)
In addition to the seven weeks of ganciclovir, I took Valcyte for five years. I stopped taking it when I was able to go off it without having my original symptoms return. (See below.) In more recent years, I have tried Valcyte, but it does not do anything for my remaining symptoms.
3) What side effects did you have? I want to hear no matter how bad it was
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I had very mild side effects from the ganciclovir, and none from Valcyte. I had mild GI distress from the ganciclovir the first week, which then disappeared. For a while, once the ganciclovir started to kick in, it made my sleeping problems slightly worse by giving me too much energy. Increasing my sleeping meds slightly fixed this. After a few weeks, this problem disappeared (although I still had greater energy during the day), and I was able to go back to my original dosage of sleep meds.
4) What benefits or symptom improvements did you notice that you specifically attribute to Valcyte?
The first two and a half years of my illness after my last relapse in September, 1998, I had constant headaches and a low grade fever. I had to take the maximum dose of Tylenol every single day. I suspect that I had some form of encephalitis.
Two weeks into my ganciclovir treatment, everything changed. Among other things, the headaches and low grade fever disappeared completely. When I went on the Valcyte, they stayed away. However, if I went off the Valcyte for more than about a week, they would come back. Finally, in the fall of 2006, I was able to go off the Valcyte without the headache and fever returning. No other symptoms returned or got worse, so I stopped the Valcyte then. The constant headache and fever have never returned.
One of the things that happened two weeks into the ganciclovir treatments is that I started getting a lot of energy. The nurse at the clinic later told me that when I first walked in the door, she took one look at me and didn't know whether to check me in or call an ambulance. Within a few weeks, I felt like my energy was almost normal. After my return from these treatments, I talked to Nancy Klimas. At that time, there were only two doctors in the country using ganciclovir to treat ME/CFS, and specialists such as Nancy Klimas were urging people to wait for the clinical trials (which were years away) before trying ganciclovir or (later) Valcyte. But she was quite familiar with ganciclovir because it was used frequently in her AIDS clinic to treat CMV retinitis, which occurs essentially exclusively in AIDS patients. She told me that a number of them had told her that ganciclovir had increased their energy levels as well. In my experience, this appears to be a direct neurological effect, unrelated to any antiviral or immunological effect. The increase in energy is most rapid at the beginning of the treatment, though I found that it continued at a slower pace during the first four years of my Valcyte treatment.
The ganciclovir and Valcyte improved my autonomic symptoms as well. Specifically, as my energy improved, my shortness of breath rapidly disappeared, along with my tachycardia. I had no other cardiac symptoms during that phase of my illness.
My cognitive dysfunction and memory also improved.
To give an idea of the size of my improvement, five months after my ganciclovir treatments ended, I flew out to see my sister in St. Louis, a thousand miles from Boston, where I was living. This was the first time I was able to fly anywhere in the three years since my relapse, and for many years after that, I was able to fly several times a year on my own to various places. While in St. Louis, I built a new computer for my sister, starting completely from parts, in an hour and a half. That is still my record for computer building.
5) What viruses were you treating or were you taking it for the anti-microglial effects or some other reason?
Before my first treatment, I was tested for active herpes viruses 1 through 7, and came back negative on all of them. However, Dr. John Martin had a test for "stealth virus" which I took; it came back positive. Dr. Martin said that all patients with CFS scored positive for this virus, while almost no people without CFS did. Dr. Kopelson, who ran the clinic I went to, accepted anyone who tested positive for this virus. Years later, it became clear that Dr. Martin was actually testing for the ciguatoxin epitope, which he presumed was a product of this stealth virus. The ciguatoxin epitope has independently been confirmed to be present in people with true ME/CFS. However, the test for it is no longer available anywhere. There are many threads on PR about this toxin and associated research.
6) How frequent were your blood tests and did you ever have a bad result on blood test which led to you stopping Valcyte?
I originally had blood tests daily at the clinic, then weekly, and finally monthly when I was on the Valcyte. I had that one incident I mentioned where my blood counts dropped for a couple of days when on the IV ganciclovir, but that was it.
7) Do you recommend Valcyte and glad you did it or do you regret it overall?
I think that Valcyte was the best treatment that I ever did. It wasn't curative, and it didn't get me back to work as it has done for a number of people, but ME/CFS is a complex illness. I certainly have no complaints. I have found Dr. Montoya's results very encouraging, and was not surprised to hear that a number of his patients who responded to Valcyte may not have had active herpes infections after all. For this reason, I would recommend at least a trial of Valcyte for anyone with moderate or severe ME/CFS, assuming that it's affordable. It really was life changing for me.
8) Did you take the brand or generic? If you took the brand, did you get a U.S. insurance company to pay for it or apply for financial assistance from Genentech (or whatever it is called?)
I always took the brand, as the generic was not available at the time. Back when I took Valcyte, insurance coverage was much better than it is now; I believe I initially paid $15 for a three month supply of Valcyte.
Thank you so much to all in advance for any responses
You're welcome!