• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Need some advice.. 5 weeks into valcyte

hello everyone,

actually im in week 5 on valcyte.. most of time on 2x450mg a day.. sometimes just 1 a day when i dont feel so good. Since 1 week im getting worse and worse.. really tired.. can barely eat something.. my head is in a bad brain fog (which was a lot better 3-4 weeks ago).. my stomach feels strange.. not painful but like "i have enough of it". I have CMV and EBV.

Im workung full time and have to do my job.. so i have to function somewhat.. should i maybe go off for 2-3 days and then start again with 1 every 2 days and work up to 1/day.. then 2/day again?


Patient in training
Hi @copi2k

You are not mentioning whether you are being followed by a physician while you are on this treatment and whether you have had a loading dose, and appropriate bloodwork before and during treatments?

You would want to make sure that the Valcyte is not toxic for your kidneys, liver and blood cells, because it can happen. Moreover other drugs or supplement could be interacting.

As for your work, only you can decide whether you are able or not to work. It's hard to give advice on that regards knowing so little about your situation. Besides, these kinds of decisions should be taken by you, with a physician advising. Nobody on this forum would have access to all of your situation.

Best of luck.
hi kati,

no i hadn't a loading dose.. and i dont want to have one. I've read that Lerner and Montoya today are not doing this loading dose anymore.. because its very hard on the system. The last bloodwork on 5th august showed everything normal.. liver.. kidneys.. red blood count, white blood count etc. prior to that, before beginning valcyte, i had elevated monocytes (18%) and low neutrophils. 3 Weeks into valcyte these parameters normalized. Next week i will check my antibodies again for cmv and ebv to see what happend...the plan is to take valcyte 2-3 months and then to switch over to famvir or valtrex