For folks who have stopped taking Valcyte: how exactly did you do it and how did your body respond?
Did you just stop cold turkey or did you wean down slowly? Did you experience any temporary rebound symptoms that eventually went away?
I started on Valcyte about 6 months ago because I had high CMV titers. Since then my CMV igm has gone negative and my igg has lowered a lot - so basically it seems like the virus has gone dormant. Based on the titer improvement, my doctor instructed me to try stopping valcyte.
Originally I started on 1800 mg of Valcyte per day and it made me feel great. But over time the side effects got worse and worse. I had a harder time sleeping and needed more and more melatonin. And mental side effects (agitation, anxiety, sadness, feeling wound up) also continued to increase over time. I found it helpful (with respect to side effects) to drop down to 1350 mg / day, or even alternating between 1350 mg and 900 mg every other day. But I'm still having tough mental side effects at that level, so I want to do everything I can to reduce further or stop entirely.
I'm trying to figure out if I'll be more successful by stopping cold turkey or by weaning down slowly. So far I've been trying the weaning approach.
I'm interested to hear how it worked for other folks.
Did you just stop cold turkey or did you wean down slowly? Did you experience any temporary rebound symptoms that eventually went away?
I started on Valcyte about 6 months ago because I had high CMV titers. Since then my CMV igm has gone negative and my igg has lowered a lot - so basically it seems like the virus has gone dormant. Based on the titer improvement, my doctor instructed me to try stopping valcyte.
Originally I started on 1800 mg of Valcyte per day and it made me feel great. But over time the side effects got worse and worse. I had a harder time sleeping and needed more and more melatonin. And mental side effects (agitation, anxiety, sadness, feeling wound up) also continued to increase over time. I found it helpful (with respect to side effects) to drop down to 1350 mg / day, or even alternating between 1350 mg and 900 mg every other day. But I'm still having tough mental side effects at that level, so I want to do everything I can to reduce further or stop entirely.
I'm trying to figure out if I'll be more successful by stopping cold turkey or by weaning down slowly. So far I've been trying the weaning approach.
I'm interested to hear how it worked for other folks.