Contrary to what many people think, Valcyte does not produce a Herxheimer reaction (as confirmed by Dr. Montoya). If the drug is making you very ill in any way, it is simply a reaction to the drug, and you need to reduce the dose or stop it, at least temporarily. Also, it was formerly thought by many that it was good to start with a "loading dose" of 1800 mg/day (such as used with HIV/AIDS), but there is no evidence to support this, and such a high dose greatly increases the incidence of negative side effects. (Again, this has been confirmed by Dr. Montoya).any thing else I should know about it?
Hi, @Joyful1 ! I like your name!Hi, It was recommended that I begin it...and am wondering how often your Physician has you do blood work? Have you had to troubleshoot any side effects? any thing else I should know about it? Thanks!
My daughter and I were patients of Dr Lerner. He did say we might feel bad for 3-6 months. I did, my daughter didn't. I was much sicker than she was before we started Valcyte, which was suggested as the likely reason I reacted more strongly.Dr. Martin Learner says you may feel bad 3-6 months...depends on how long you have had ME (?)....i think. Best wishes!
@IrisRVMy daughter and I were patients of Dr Lerner. He did say we might feel bad for 3-6 months. I did, my daughter didn't. I was much sicker than she was before we started Valcyte, which was suggested as the likely reason I reacted more strongly.
Dr Lerner was very firm that the rxn was NOT a Herxheimer rxn. That's a bacterial thing. Antivirals and viruses don't behave in a way that produces a herx. IIRC (and I may not), Dr L thought that those of us who are really sick have "worn out" (to use a layman's perspective) immune systems. They can't fight the virus effectively anymore. The antiviral strongly suppresses viral replication so that our immune systems have less to deal with over time as the already virus-infected cells die off. As our immune systems become less stressed, they comes online strongly and we get the flu-like rxns, which are the result of immune up-regulation, not the virus itself.
This is by no means a scientific explanation. It's more the layman's 'get a general idea of what's going on' explanation.
My uncle was on Valcyte the longest of anyone I know. I think it was 8 years. He was one of the earliest Valcyte patients. I think there was a lot of dosing experimentation early on, so the treatment may not have been as effective as it might have been for a number of those years.
I think I was on maybe 4 years, then off 2, and then on 2 for one or two cycles. Basically, my doc wanted me off as long as possible -- until my symptoms started coming back and my titres started climbing rapidly. For me that was about 2 years. I finally got off Valcyte when I became eligible for IVIG. Haven't needed Valcyte since.
There does seem to be something genetic in my family. We've had Hodgkin's lymphoma in 3 generations as well as ME/CFS in 3 generations (not the same people). Hodgkins can be related to EBV. We guess some immune irregularity that makes our bodies less able to handle herpesviral infections. Pure speculation, of course.@IrisRV
Wow, that is a very helpful explanation! You have a lot of it in your family. How does one become eligible for IVIG? I am already told I need it. This is all new to me. I have been ill a long, long time but just got diagnosed, sadly. I am feeling pretty overwhelmed right now...feeling like I will never get better, but I keep hoping! We have our first grandchild on the way and we'd like to be able to watch the child for more than 5 minutes! :-D