Tips on tolerating Valcyte?

[geekbread]

I started taking Valcyte a few weeks ago, I first started with the dose my doctor (a CFS/ME specialist) gave me at 450mg 2x a day.

It initially gives me a boost but after a day or two really makes me even more fatigued and a bit depressed. I started taking a much smaller dose, just 1/8th of a tablet a day at night. I tried morning too but am thinking nighttime would be better to let my body tolerate it.

I'm still feeling pretty tired from it. Interestingly enough, when I don't take it for a day, I feel better than my baseline and in a better mood, maybe that is a good sign. Then I usually am fine the first day taking it, and am worse the second day and beyond after a break.

Any tips like supplements that would help me tolerate Valcyte better? Should I alternate days until my body gets used to it? Would love to hear any experiences.

 

[2Cor.12:19]

Hi @geekbread - I looked over my Valtrex journal notes from 2017 and initially started with 500 mg x 3 daily. That was too much so I cut back to 500 mg x 2 daily. I had some side effects (just feeling overall lousier) for awhile but that eventually settled down and I actually had some better days for awhile.

I was on it several months and switched to flamciclovir for several months. I lost my notes as to exactly how long, but I know I gave it the good old college try.

Overall, neither really did enough to warrant continuing. Both caused extra fatigue. I will say, that I never had one outbreak of herpes while on them though - so that's a good thing. And it's probably be a good shingles preventative as well.

Sorry, I couldn't be of more encouragement. Keep trying - some people do see continued results in time.

 

[Pyrrhus]

I started taking a much smaller dose, just 1/8th of a tablet a day at night.

I'm still feeling pretty tired from it.

So sorry to hear that you're having trouble tolerating the standard dose of Valcyte.

You're not the only one. Many other people report problems tolerating the start-up effects from Valcyte. I've heard that these start-up effects can last up to 12 weeks, which is very annoying.

Some people have such strong start-up effects from the standard dose of Valcyte that they have to stop it altogether. Other people have to stop the Valcyte because their doctors find a decrease in immune cells.

In my case, I had a sharp drop in my blood cells called monocytes for the first 12 weeks, and then my monocyte levels recovered even though I continued the Valcyte. I continued the Valcyte at 450mg twice a day for a full year, but didn't see any improvement in my ME symptoms.

But it's probably a very bad idea to lower the dose. Taking a sub-standard dose will fail to suppress the virus and may lead to the virus becoming resistant to the drug.

Hope this helps.

 

[heapsreal]

I stopped and started valcyte a few times before i could tolerate it. Id last maybe a week than it was too much. After trying this a few times, one time i started it and toletated fine and kept going.

But those initial trials it greatly increased lethargy and depression. I was only taking 450mg per day with famvir 500mg x 2 a day.