Regimented Valcyte protocol?

[Bdeep86]

I have seen so much about valcyte and my research has really landed me at a point to where I certainly believe neuroinflammation is key player in my situation. I want to pitch trying this medication to my doctor. However I am trying to piece together some information on how it is done. I'm not sure on the starting doses and I gathered I need to run monthly blood labs. Can anyone point me in the right direction on this? I really appreciate the help.

 

[SOC]

I have seen so much about valcyte and my research has really landed me at a point to where I certainly believe neuroinflammation is key player in my situation. I want to pitch trying this medication to my doctor. However I am trying to piece together some information on how it is done. I'm not sure on the starting doses and I gathered I need to run monthly blood labs. Can anyone point me in the right direction on this? I really appreciate the help.

Dr Lerner may be the most experienced clinician in using Valcyte with ME/CFS. HERE is his Treatment Guide. Search for Valcyte for details on dosing. It's about halfway down.

 

[Bdeep86]

Great thank you so much, I will look this over now.

 

[Bdeep86]

So from what i've gathered, valcyte ranges from having no effect on some and causing dramatic change in others. Generally people with CFS don't experience the major black box warnings but sometimes they go through periods of feeling extremely unwell. It is generally given at 450mg twice daily for 6 months. Does this assessment seem accurate?

 

[SOC]

So from what i've gathered, valcyte ranges from having no effect on some and causing dramatic change in others. Generally people with CFS don't experience the major black box warnings but sometimes they go through periods of feeling extremely unwell. It is generally given at 450mg twice daily for 6 months. Does this assessment seem accurate?

Sounds about right except that most PWME need much more than 6 months of treatment. I'd say 18 months is more typical.

 

[Bdeep86]

SOC I have seen some on here say it is OK to cut the tablets and others say not to. Is their a consensus i'm missing? I tend to react poorly to basically everything so i'm a little nervous starting with a whole pill. Thanks for your help.

 

[Bdeep86]

@SOC how quickly do you generally see people react in some way to valcyte? I'm on day 3 and not noticing much, i'm not taking it for anti viral properties and i'm considering keeping it at maybe just 225mg, do you usually see people feel better the more they increase?

 

[SOC]

@SOC how quickly do you generally see people react in some way to valcyte? I'm on day 3 and not noticing much, i'm not taking it for anti viral properties and i'm considering keeping it at maybe just 225mg, do you usually see people feel better the more they increase?

You are not likely to see a result in 3 days. Reports of first clear signs of improvement range from several weeks to many months, with significant improvement taking at least 6 months and closer to 18-24 months.

If you are not taking Valcyte for it's antiviral properties, why are you taking it? If it's for neuroinflammation effects, there might be safer and more effective medications. Have you tried LDN yet?

Valcyte is a very serious medication with potential for VERY serious side effects. You need to be monitored closely for those side effects, especially in the early months. I hope you are under the care of a knowledgeable physician who is doing the necessary testing to make sure you are using Valcyte safely.

 

[Bdeep86]

@SOC I tried LDN if anything it made it worse. I believe I have already very high levels of endorphins due to brain inflammation. I don't expect to see any results or anything just a reaction. I am under the care of a doctor but I think this is a very new protocol for him. I have blood work to look at my liver enzymes and blood count after a couple weeks.

 

[JAH]

You may have to be on it for over a year to see results. (I've also heard up to 2 years!) I've been on it for over a year without much success, but I see Dr. Montoya and he has pleaded with me to continue...so I am.

JAH

(I only had trouble with it when I increased dose - I can only tolerate 450 mg a day. 900 mg really kicked my ass)

 

[SOC]

@SOC I tried LDN if anything it made it worse.

Did you start very low and work up or did you start at the maintenance dose? Many people can't tolerate the full dose in the beginning. Of course, there are people who can't tolerate it at all and you could be one of them.

I don't expect to see any results or anything just a reaction. I am under the care of a doctor but I think this is a very new protocol for him. I have blood work to look at my liver enzymes and blood count after a couple weeks.

It is unlikely you will notice anything at all for some time. Valcyte is not a medication that you get an immediate response from... unless you have a bad reaction to it. That can happen very quickly, apparently.

A few days is nothing with these medications. You'll need to be patient.

That is good news that your doctor is monitoring you carefully for side effects.

 

[Bdeep86]

@SOC yes I took quite a low dose of LDN at .25, it made things worse. Highly primed microglia can become stimulated by endorphins and when endorphins go too high they can further inhibit GABA which is what i believe happened in my case. It was pretty instant and didn't go away after several months. Yes I have gathered Valcyte isn't something i'll notice immediately I have just seen a couple of accounts of it causing some issues in people rather quickly that were for the negative. Appreciate your response. I am at a point now where I am questioning if I should take the full 450 twice a day or take less, it seems some don't need the full dose.

@JAH Thank you for your response. That is quite a awhile to not feel anything I hope your patients pays off. I have been looking around the internet at stories of people using this, I have seem some go many months of misery without getting anywhere. I haven't seen someone go a whole year! That is kind of disheartening lol

 

[redaxe]

Sounds about right except that most PWME need much more than 6 months of treatment. I'd say 18 months is more typical.

Does it have to be a dose of 1800mg daily. I'm a bit scared to go on a dose that high for a long period of time so I'm at 1350mg daily. Is that still enough to be effective?

 

[Bdeep86]

@redaxe how long have you been on that dose?

 

[SOC]

Does it have to be a dose of 1800mg daily. I'm a bit scared to go on a dose that high for a long period of time so I'm at 1350mg daily. Is that still enough to be effective?

I've never taken more than 1350mg daily and that was early on. Now I take 900mg daily.

 

[Bdeep86]

@SOC i'm curious do you feel that the bulk of valcytes benefits come from its anti-viral or its anti microglial? Not trying to start a debate by any means but clearly you have seen more anecdotal reports and would love to get your opinion.

 

[SOC]

@SOC i'm curious do you feel that the bulk of valcytes benefits come from its anti-viral or its anti microglial? Not trying to start a debate by any means but clearly you have seen more anecdotal reports and would love to get your opinion.

Honestly I can't really say. The antiviral effect was big for me, personally, but I've heard frequently enough that Valcyte has been beneficial to people without active CMV/HHV6 that I believe it has to have a significant effect on microglia as well. Which effect is bigger? Hard to say. It may depend on each person's individual situation.

 

[redaxe]

@redaxe how long have you been on that dose?

About 4 weeks. I started at a lower dose to build up to it so about 6 weeks in total. I think the CFS doctors used to start with a high dose but now they've found that its the length of treatment that is more important so starting off a bit lower gives your body some time to adjust to it.

I just hope the Cipla generic is up to scratch. Because I can't afford $3600 a month for the Roche brand.

 

[redaxe]

@SOC i'm curious do you feel that the bulk of valcytes benefits come from its anti-viral or its anti microglial? Not trying to start a debate by any means but clearly you have seen more anecdotal reports and would love to get your opinion.

To be honest I don't think we're going to get an answer to that until Brincidofovir comes out. Apparently it has a much much stronger antiviral effect and is much more broad spectrum. It should be about within the next 2 years hopefully and so long as it is reasonably affordable I think many of us will be trying it.

 

[minkeygirl]

I know this is an older thread but I have a question about going up slowly.

We know that's best but then Can they cause viral resistance?

Those on 450 upping to 900. Did you split w 450 and up to 675 mgs?

I started on 450 and have had zero problems.