Today marks the last day of taking the 1800mg loading dose of Valcyte. I'm glad this part is over. Tomorrow I'll start taking 900mg one time per day (2 450mg pills). Because I'm crushing the pills I think this is the best way. I'll also save money on Applesauce.
I'm surprised at how few blogs there are about people's experiences on Valcyte. I find it helpful to hear about people's experiences which is one of the reason's I'm recording mine-in case someone finds it helpful.
To summarize the past 3 weeks the most dramatic effect has been my mood. It's a different ball game than regular depression (which is awful in itself). I had two days where I had intense weird anxiety that was almost intolerable. Taking Valcyte with food and a big glass of water seems to have resolved that. The next most troubling effect is heart palpitations and what feels like heart pain. This has occurred the past 3 days. I've had the heart palpitations with this illness but it has intensified with Valcyte. At night I can hear my heart pounding (I sleep with earplugs in because I'm sensitive to noise). The heart pounding and palpitations have been worrisome in that I've wondered if I'm about to have a heart attack. I did some research into this and other patients have experienced this as well. It's not listed as a side effect but seems more to do with possible viral die off. Because the virus is likely in my heart as well as my CNS it makes sense that I'm having increased heart symptoms. It's disconcerting nevertheless. Friday I had a period where I felt like I just needed to lay down. Yesterday I had bad body aches. Today has been unremarkable.
I started reading Encounters With the Invisible by Dorothy Wall. Luckily they had it at the local library. I highly recommend this book. It's very well written. Even if I didn't have this illnes I would enjoy the book.
Other than that I'm hanging in there. I'm trying to figure out how to accept this. I have moments but they are fleeting.