Valcyte-what is the longest consecutive time anyone has been on it?

[Joyful1]

Hi...For Folks who have or are on Valcyte...what is the longest amount of time you have been on it?
And...have you had any irreversible or serious side effects?

Thank You!

 

[ladybug64]

I have been on it for 3years...and you?

 

[Joyful1]

I have been on it for 3years...and you?

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!

 

[ladybug64]

At first I did monthly labs (CBC , CMP)--now doing every 2 months as I have never had a problem. I see Dr Montoya @ Stanford. I take it 3x/dah and wouldn't get out of bed at all without it. It even still not enough energy to even shower every day. Most days I cannot leave the house...
I don't notice any major negative side effect

 

[Remy]

I took it for almost 2 years. No real problems with it (other than it didn't really help me much.)

 

[zzz]

I took Valcyte for six years straight at a dose of 900 mg/day. I never had side effects of any kind.

I started Valcyte right when it was released (August of 2001). A few months before, I had done a seven-week course of IV ganciclovir. I had some minor, temporary side effects from this, specifically GI issues and insomnia, but they went away after the first few weeks. This may very well be why I never had any side effects from Valcyte.

When I was on Valcyte, I initially had blood work done weekly, then monthly, and eventually quarterly.

any thing else I should know about it?

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).

 

[Farmgirl]

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!

Hi, @Joyful1 ! I like your name!
I started Valtrex 3 months ago. It made symptoms worse in some ways. BUT I noticed the dark circles under my eyes are a bit better and my nails had been falling off before I started and they are kind of normal now. I started LDN at the same time, as well as extra B12. Dr. Martin Learner says you may feel bad 3-6 months...depends on how long you have had ME (?)....i think. Best wishes!

Also, I had a lot of blood work for viral counts which showed all active. Sorry you are unwell like me! I had to thank God all the time that I can walk short distances at least...around the house.

 

[IrisRV]

Dr. Martin Learner says you may feel bad 3-6 months...depends on how long you have had ME (?)....i think. Best wishes!

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 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.

 

[Farmgirl]

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 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.

@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

 

[IrisRV]

@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

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.

For me, at least, my IgG had to be below normal range. My IgM has been very low for a long time, but that doesn't make you eligible for IVIG. My IgG was at the low end of normal and dropping slowly but continuously. When it finally dropped below normal range I could get IVIG. It's hugely expensive and you have to spend 3-4 hours once a month in an infusion center with an IV in your arm. It's not a treatment to be taken lightly.

IVIG has reduced my infections and my flu-like symptoms. My baseline is noticeably higher, my health is more stable, and I feel better overall. I'm a great deal more functional with IVIG than without even though I'm still extremely limited. I've accepted (not that I like it) that I'm not going to be anything approaching normal for the rest of my life. However, my quality of life is much improved and that is a very big thing for many of us.

Congrats on the first grandchild! I'm still waiting for my kids to decide. I believe I could watch a grandchild for 3-6 hours now, which is a huge improvement over bedbound and not even able to read. I'm not cured. I probably haven't treated the root cause, but I've got enough symptomatic treatments on board to have some functionality. I consider that a great blessing.