Is Valcyte dangerous?

[hunter1899]

First off I don’t want to alarm anyone, I know just enough about this whole thing to be dangerous. But I’ve heard it can cause cancer and other serious permanent side effects. Is this a real concern?

 

[andyman123]

First off I don’t want to alarm anyone, I know just enough about this whole thing to be dangerous. But I’ve heard it can cause cancer and other serious permanent side effects. Is this a real concern?

Not really.

I took it for over 4 months on my own accord ordering drugs from alldaychemist (valgan).
It does have more side effects than Valacyclovir. I initially had diarrhea and later on my testicles ached (sorry, but want to be frank).

All side effects subsided once I stopped.

Valacyclovir gets be by well enough now.

Bottom line: if you are sick and can afford it, try it. It's pretty safe. Even Ron Davis said Whitey (his son) was on Valcyte for 18 months (didn't help) but he was fine.

 

[geraldt52]

I think there are very few doctors who would prescribe Valcyte without regular testing for liver function.

 

[leokitten]

It’s not really dangerous in my experience. I took it for 2 years straight or more. Only side effect I had was it worsened my already bad wired but tired and insomnia symptoms. And it was definitely the Valcyte, the moment I stopped the symptoms reduced to ME baseline terrible and the moment I would start again it worsened.

You must do periodic liver function checks as it will make your liver enzymes go up somewhat, but in my case nowhere near any danger zone. The number of 450 mg pills your doctor has you take every day will affect this. Generally I think you never go above 900 mg per day of long-term dosing.

 

[andyman123]

It’s not really dangerous in my experience. I took it for 2 years straight or more. Only side effect I had was it worsened my already bad wired but tired and insomnia symptoms. And it was definitely the Valcyte, the moment I stopped the symptoms reduced to ME baseline terrible and the moment I would start again it worsened.

You must do periodic liver function checks as it will make your liver enzymes go up somewhat, but in my case nowhere near any danger zone. The number of 450 mg pills your doctor has you take every day will affect this. Generally I think you never go above 900 mg per day of long-term dosing.

These two are right, doctors are always going to be extra cautious no matter how terrible you feel. Most regular doctors don't understand it and the path to a specialist and setting up a time is a long one.

I remember I called a few specialist, some had months waiting times and even over a year.

If you are really sick and act on your own initiative, I would consider ordering it.

They always want to test and almost all the studies I read almost everyone does okay. I used to share antiviral info on reddit but got tired of it. While some people were receptive and thankful, more than half always attacked me. Antivirals (most) are relatively safe and the fact that it can change your life makes it a worthy gamble. 2cents.

 

[andyman123]

Anyway, hope you find success with a treatment Hunter. I still occasionally have mild problems but nothing that stops me on any given day.

I still occasionally visit forums because I remember the sheer hell I was in just a couple years ago and ever so slowly climbed out of. Keep trying stuff!

 

[hunter1899]

Anyway, hope you find success with a treatment Hunter. I still occasionally have mild problems but nothing that stops me on any given day.

I still occasionally visit forums because I remember the sheer hell I was in just a couple years ago and ever so slowly climbed out of. Keep trying stuff!

Appreciate it. I’d like to hear more about your success story from symptoms to treatment if you’ve got the time.

 

[andyman123]

Appreciate it. I’d like to hear more about your success story from symptoms to treatment if you’ve got the time.

For me there was a definitive triggering event. After kissing a girl that was a friend of mine.

I went to planned parenthood and they did serology for hsv1 and hsv2, both turned up negative. But I kept having blood blisters pop up inside mouth. They wouldn't do anything about it.
I made a couple of visits to different doctors (general practitioners) and both refused to even give me Valacyclovir (Valtrex) which is very safe.

I actually think I read up on online pharmacies here. @Hip has many valuable write ups on here.

Also, don't get discouraged because some people are sick for years. The unfortunate thing is many that do get better or manage it get on with their lives and disappear. So you get an overwhelmingly gloomy portrayal of your chances.

The prognosis is pretty good if you had a triggering event, like me, usually you'll slowly get better but antivirals can really speed up the recovery process.

https://www.reddit.com/user/cfs_throw/
That account has long been abandoned but that's a good example of someone who was significantly helped by just Valtrex. His doctor (his childhood doctor) gave him that only after he gave him lots of papers on it.
Like him (if you read his posts) I came to view doctors as inconvenient gatekeepers.

There's another member on here that found me on a youtube comment and ordered Valacyclovir on alldaychemist. He's had some success and he had been sick for a long time. Point being you should have some hope.

Nowadays my problems are more related to lesions on my tongue and I still get the blister inside my lip, but now its a little red dot instead of a bulging bubble. Whether or not it's one of the alphaherpes viruses I don't know I just know Valacyclovir does significantly mitigate the pain.

Hope you make a decision to try something and improve.

 

[leokitten]

It is completely untrue that having a triggering event generally leads to better prognosis, some 80% of ME/CFS was triggered by a sudden viral infection and more than that had some triggering event in general.

@andyman123 how old were you when you got sick and how long were you sick until you started improving? Those are the main factors of better prognosis than anything else, nothing else is even close.

I’m hazarding a guess that you are younger and you weren’t sick very long before you started improving (<5 years before seeing steady improvement). People keep forgetting that and thinking it was all due to medication when in fact it was very likely just blind luck and timing.

Almost all of the people who’ve taken Valtrex or other antivirals don’t see any long-term improvements. I understand where you are coming from and yes it’s a low risk treatment, but please give people other important information about you and your case so that they can know the major factors in your improvement, some of which have nothing to do with what treatment you did.

 

[andyman123]

I got sick just before turning 32, I'll be 36 soon.

I share my experience yet someone always has to come in and gaslight me. lol.

Below are images of one manifestation of my problem and some of the drugs I now use to help. On really bad days I've consumed as many as 10 1000mg Valacyclovirs below. Normally I just keep it down to 3-4 a day now.

Anyway. Good luck with your decision those reading this.

 

[leokitten]

I was simply asking for information as to the two strongest prognostic factors of ME prognosis, age and time having disease before improvements. You were on the younger side and you hadn’t been sick for a long time before starting to improve. Those are huge factors. What I’m trying to say is if you got ME years older and had it longer before trialing treatments then Valtrex might not have worked at all.

Virtually no one who’s ever recovered or near recovered from ME knows for sure why they did or what caused it. It’s not gaslighting it’s just the hard truth, because if Valtrex worked for you then why does it not work for almost anyone else? Even those with proven herpes virus reactivation bloodwork? It’s because you don’t know and none of us knows what really is happening.