• 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 become a member, simply click the Register button at the top right.

famvir

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@minkeygirl didnt want to step on crossers thread. but wanted to ask you about the famvir.
how long have you been at 1000MG? you said it has helped you this past year? did you start at 250?

hope this makes sense. thanks
cb

I've been on Famvir I think 2 years. I started really low at 250 mgs. I started and stopped a few times over the course of a few months.

I can't quite remember what exactly the problem was but I really wanted to take it. I think pain and just feeling horrible. I had been taking acyclovir but that no longer helped and I could not take valtrex due to horrible side effects

I can't quite remember but I may have started with 500 mgs. When I had what I call my first viral reactivation (during weeks of dental work) I upped to 750. I know I had immediate relief from my sore throat but was still feeling exhausted so I upped it to 1000 mgs. Within 2 days I was almost back to where I was.

I had more dental work to do so I dropped back down to 750 mgs so I would have somewhere to go if I had another problem, which I did.

I think though I stopped the Famvir for a few days then just took 1000 mgs. I was in pain for a few days, which I expected, but I toughed it out and day 3 or 4 I was good.

Now I stay at 1000 mgs. My wanting to up to 1500 mgs is because I think that is what Lerner did. I still want to but I'm dealing with other stuff now so it can wait.

Some say valtrex is better but I cannot take it. I'm happy with this and am pretty convinced it is at the very least helping me from not getting worse
 
Last edited:

cb2

Senior Member
Messages
384
thank you for sharing your experience with me. It definalty sounds like it is helping you. I didn't feel well on the valtrex either. smart thinking @minkeygirl to drop it before your dental work so you could increase it as you needed too!
i found this eariler today.. page 6 has the dosage schedule listed..kinda sounds what you did intuitively.

http://www.drpodell.org/ValtrexConsent.pdf

I tried famvir back in july but didnt feel well..but i also had other things going on so i am not sure what caused what.. so now i am going to go back to the famvir! yay.. we'll see how it goes.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
About a week on valtex and I was in a rage. After I totally shredded three consecutive people at my bank it dawned on me this wasn't right. Lol. I googled valtrex side effects and one big one was agitation and personality change. I stopped and so did that intense rage.

With anything I take I start very low and work up. With av's you don't develop problems like you might with abx so you don't need to rush into the maximum dose.
 

cb2

Senior Member
Messages
384
glad you were paying attention to your moods! i had really bad depression with valtrex and i felt more tired.
good thinking about starting "low and working up" thanks!
 

cb2

Senior Member
Messages
384
been taking the famvir for almost two weeks and i noticed yesterday there is a heavy cloud of depression. i had this with valtrex too.

is it odd this would make me depressed? maybe i will go back to acyclovir and see if it is any better- i hate to change after only 2 weeks..but depression isn't good.

anyone have any thoughts or experience to share? thank you
cb
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
thoughts or experience to share? thank you
I had terrible depression and anger on valtrex. I switched to famciclovir and it seemed slightly better.
I am now just starting acyclovir which I am worried about bc valtrex is the prodrugreatest of acyclovir, meaning valtrex turns into acyclovir in your body. I just started today and I am very nervous about the depression. Hoping that ldn will keep me our of the depression this time. Good luck! Let me know how your doing.
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
Huh, I've been on 2000 mg (started at that dose per dr) of famvir since September and I know I've been cranky, irritable, and flat mood for quite some time. I wonder if that could be the culprit?! I also started on a pretty low dose of Dexamethasone at that time and I've been blaming it on that. Or the pain. Or being tired. Or who the hell knows lol.
 

cb2

Senior Member
Messages
384
funny huh they never tell us about the emotional side effects of the medication- so much is unknown. we should keep checking in. @Clerner i hope you do well with the acyclovir. @Firefly_ i know it is hard to tell, wish i had answers..
 

cb2

Senior Member
Messages
384
@Clerner you could try? they say it is best to try one thing at a time you you know what is causing what, if you can. did the weight gain come from being depressed ? if you are just starting acyclovir you dont know for sure it will cause you to be depressed yet right?
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
did the weight gain come from being depressed ? if you
I don't think weight came from depression but I'm not sure. It seemed like weight was a strange tummy bloating. As soon as I stared low doseason naltrexone the weight just fell off without really trying. It is known to help depression though and when I have less pain I probably eat less. Hard to say...You are right, I should give it time to see if acyclovir is the culprit. Hopefully the ldn will keep weight in check.
 

ebethc

Senior Member
Messages
1,901
I don't think weight came from depression but I'm not sure. It seemed like weight was a strange tummy bloating. As soon as I stared low doseason naltrexone the weight just fell off without really trying. It is known to help depression though and when I have less pain I probably eat less. Hard to say...You are right, I should give it time to see if acyclovir is the culprit. Hopefully the ldn will keep weight in check.

@Clerner - are you saying that when you started taking LDN WITH valtrex you started to lose weight (vs valtrex alone caused weight gain)? sorry, I'm a little foggy and I can't follow :) Also, do you have a weight problem to begin with?

I am already heavy and have no energy to exercise, so I don't want anything else working against me re weight gain!

thanks.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
are you saying that when you started taking LDN WITH valtrex you started to lose weight (vs valtrex alone caused weight gain)?
I had stayed at a steady weight before valtrex. I know it was the valtrex that caused weight at least for me. If you Google it, there is a lot of weight discussions. I stopped the valtrex, then started ldn. I never took them together. As soon as I started ldn the weight just fell of without even really trying. Ldn will likely make you lose weight. But, it stopped all my pain! It has been amazing for me. I am on acycolvir but do the swish and spit 4x a day so I don't have any side effects. Good luck!
 

ebethc

Senior Member
Messages
1,901
I've been on Famvir I think 2 years. I started really low at 250 mgs. I started and stopped a few times over the course of a few months.

I can't quite remember what exactly the problem was but I really wanted to take it. I think pain and just feeling horrible. I had been taking acyclovir but that no longer helped and I could not take valtrex due to horrible side effects

I can't quite remember but I may have started with 500 mgs. When I had what I call my first viral reactivation (during weeks of dental work) I upped to 750. I know I had immediate relief from my sore throat but was still feeling exhausted so I upped it to 1000 mgs. Within 2 days I was almost back to where I was.

I had more dental work to do so I dropped back down to 750 mgs so I would have somewhere to go if I had another problem, which I did.

I think though I stopped the Famvir for a few days then just took 1000 mgs. I was in pain for a few days, which I expected, but I toughed it out and day 3 or 4 I was good.

Now I stay at 1000 mgs. My wanting to up to 1500 mgs is because I think that is what Lerner did. I still want to but I'm dealing with other stuff now so it can wait.

Some say valtrex is better but I cannot take it. I'm happy with this and am pretty convinced it is at the very least helping me from not getting worse

I saw an old post where you said that famvir caused severe constipation... I have IBS-C, too, and this could be a stumbling block for me, too, w famvir. How did you get over the constipation?