Dr L put me on 1800 mg of Valcyte (900 twice a day) when I started it last fall. I've done fine on that dose from the start, but am wondering if after a year now I should be thinking about reducing my dose down to 1350 or even just 900.
I feel like I've plateaued on Valcyte though it did take care of a lot of my OI/dizziness. I had planned to stay on Valcyte for at least 18-24 months provided that my labs stayed in good shape regardless though.
Any thoughts? Would love to hear what dosages and length of time others used for Valcyte.
Thanks!
We never got up to 1800 mg daily. Daughter and I both took 1350 mg daily for about 2 years during our first round of Valcyte. We then went 2 years without Valcyte before we both had HHV6 reactivations (to those who don't believe in HHV6 reactivation, I point to
increasing titres and significant symptom increase, particularly in the cognitive area). At that point we went back on Valcyte at 900 mg daily. We've been on that dose for almost a year.
We had improvements much more quickly during the second round. I noticed improvements within a month. My guess is that might be because we caught the reactivation relatively early. During both rounds I had large, very clear improvements of my symptoms at the 6 month mark, in addition to smaller improvements earlier and later. I don't know if that 6-month symptom decrease is due to antiviral effects of the medication or its effect on microglia. It could be either, or both, I suppose.
Based on our experience alone, I'd suggest staying on Valcyte 18-24 months if you are tolerating it well. I suspect that the longer you inhibit replication of the virus, the less you have in the reservoirs and the longer it will take to build up to the point where you need to take Valcyte again. That's just a guess, though.
Valcyte has been huge for me. Other treatments have certainly helped, but Valcyte is the one that have given me the biggest improvements in my condition. Five years ago I was bedbound, unable to take care of my activities of daily living, unable to think clearly enough to read a book. Taking a shower was a major effort. My life was laying or sitting in bed and watching the birds through the window. By contrast, I am now working (tutoring) 30 hours a week and am able to walk around the mall all afternoon doing my Christmas shopping. IMO, that's huge.