Famvir or not?

[beaverfury]

I see 2 different brands listed on magicpharma. I think I read somewhere someone's doctor said Cipla brand was ok? Does anyone know if Macleods is a good brand?

Cipla Famvir US$112 for 30tabs of 250mg, Macleods US$48 for 30 tabs of 250mg.
Thats a big price difference. I've often wondered about the quality of Indian generics.

I guess its a 'suck it and see',option.

God bless you, heaps!

I have used both brands and they were good.

Youre worth more than all the randomized double blinded trials in the world. Stay safe.

I've been pussyfooting around with this sucky ailment, might have to go thermonuclear on its ass and trial famvir!!
Tests first.

 

[heapsreal]

Cipla Famvir US$112 for 30tabs of 250mg, Macleods US$48 for 30 tabs of 250mg.
Thats a big price difference. I've often wondered about the quality of Indian generics.

I guess its a 'suck it and see',option.

God bless you, heaps!


Youre worth more than all the randomized double blinded trials in the world. Stay safe.

I've been pussyfooting around with this sucky ailment, might have to go thermonuclear on its ass and trial famvir!!
Tests first.

buy the 500mg tabs and a pill cutter and cut in half for 250mg dose, works out cheaper then buying 250mg tabs seperately.

cheers!!

 

[HTree]

Hi All,
interesting thread. Dr. Rey/Klimas here in the U.S. prescribed just 125mg famvir 2x a day (total 250 mg). I very slowly worked up even to that dose, since i am so sensitive! So been on partial dose of this for month, but taking only full dose for a few days. Nothing bad yet
My infections are EBV/HHV-6, and very low NK function.
I wonder why such a low dose compared to others...I shall try to ask and report back (may be due to my low NK cells).
She mentioned via extrapolation she though effective against EBV, and with the least side affects compared to other AVs. But I will try to ask for clarification...
Peace
Htree

 

[ebethc]

My experience with famvir is good. I have used low doses compared to what is commonly prescribed in cfs, 250mg twice a day and been on it for over 2 years. I havent had any die of symptom and my liver function has been good the whole time. I have ebv/cmv and famvir at this dose has lowered my high lymphocytes which indicates these infections are ongoing and have responded to this treatment. I always tell people its not a cure but can improve cfs symptoms, for me i think these viruses reactivate due to my low nk function. Until theres a cure for nk function i think these av's are going to be needed for along time until one can come off them ???

A one month trial probably wont tell u if its going to improve you but can help u find out if your going to have a bad reaction to it. give it a good 3-6 months to make a judgement on whether its helping. www.magicpharma.com sell famvir at a good price .

cheers!!!

Hi @heapsreal - I also have low nk function, and will likely try famvir.... Do you think that you will take low-dose AV's for the rest of your life to compensate for the low nk function? I gather that CFS patients take them for 1-2 years, but if your NK function is low, wouldn't you need them for life? thanks.

 

[ebethc]

The only time I have seen anyone speaking of doses of Famvir above 500mg, 3X a day is Satoshikasumi. Am I wrong and missing others taking the huge dose Sato speaks of??

Famvir was effective in taking down my HHH6 significantly. I started with 500 mg, 3 times a day and had to fight insurance for that kind of dosing for a full year. I backed down after a year and take only 500 mg once a day to keep symptoms under control. I never had negative side effects EXCEPT hair loss.

do you still take Famvir? I'm not clear on this, but think a lot of ppl take it for a year or two at high doses, then take a maintenance dose forever...

 

[heapsreal]

Hi @heapsreal - I also have low nk function, and will likely try famvir.... Do you think that you will take low-dose AV's for the rest of your life to compensate for the low nk function? I gather that CFS patients take them for 1-2 years, but if your NK function is low, wouldn't you need them for life? thanks.

I'm a few years late at replying to this but I think I will be on famvir for life. So far
2009-2022. Struth I've spent a fortune on it now.
Interesting looking back at this older thread.

 

[godlovesatrier]

It's not cheap is it @heapsreal !

I think based on most other patient stories while some can come off it many have to stay on it. Depends why the immune system is broken I think, also with covid they are finding it destroys the t cells completely, this is being reproduced over and over again. So it makes me wonder what other viruses can do to us as well.

 

[Pearshaped]

It's not cheap is it @heapsreal !

I think based on most other patient stories while some can come off it many have to stay on it. Depends why the immune system is broken I think, also with covid they are finding it destroys the t cells completely, this is being reproduced over and over again. So it makes me wonder what other viruses can do to us as well.

does that mean once you tried it you cant get off of it ?

 

[heapsreal]

does that mean once you tried it you cant get off of it ?

One can stop taking antivirals at any time. There's no withdrawals or anything like that.
What can happen when you stop is that your viral load will start to increase as there's no antivirals to stop the virus replicating. It's all dependent on your immune system and if it can keep these viruses down.

For some people, 6 months or so can be enough to get the viral load down and 'rest' your immune system, that it can control the viral load on its own.

For me, probably because of low natural killer cell function, my immune system on its own can keep viral load down, so have to stay on famvir.

It's really trial and error if the antivirals will help one and also trial and error if one can stop antivirals after a period of time and maintain their improvements.

 

[godlovesatrier]

Thanks heaps. Been on valtrex four months now, but I did have a 4 to 5 week period where I was completely stable and operating at a very decent level. I am not sure yet if I am going to expereince terrible allergy season as I always do or not, we will see. Haven't taken famvir for awhile as it seemed to be reactivating ebv over and over again.

 

[heapsreal]

Thanks heaps. Been on valtrex four months now, but I did have a 4 to 5 week period where I was completely stable and operating at a very decent level. I am not sure yet if I am going to expereince terrible allergy season as I always do or not, we will see. Haven't taken famvir for awhile as it seemed to be reactivating ebv over and over again.

I'm glad one of the antivirals are helping you.

I'm possibly going to do another course of valcyte but want to get some testing done first. I think I found a place to get cmv titres tested. If high then it's worth the cost of valcyte.
I don't want to guess at the high price of valcyte, but I've done it before.

Cheers

 

[godlovesatrier]

Glad you're doing ok Heaps. Yes valtrex doing something, definitely feel like it's supressing ebv which wsa the point. But the ME is still more or less where it was cannot get beyond the 5 to 10% improvement. But cognitively I am now much more stable, which is amazing.

 

[heapsreal]

Glad you're doing ok Heaps. Yes valtrex doing something, definitely feel like it's supressing ebv which wsa the point. But the ME is still more or less where it was cannot get beyond the 5 to 10% improvement. But cognitively I am now much more stable, which is amazing.

I think it can take awhile to suppress these viruses. A full 12months on valtrex will be interesting to see if you notice more improvement.

 

[Pearshaped]

I'm thinking about trying Famvir for chronic EBV, I had Valtrex prescribed a couple of years ago but it made me feel quite ill, and for some reason I lost a lot of hair??
Just wondering whether Famvir works better if you have a round ov Valtrex first or its strong enough on its own. Any experiences?[/QUOTE
Its been a long time, how were your experiences with Famvir @maryb
?

 

[Pearshaped]

@maryb its been a long time since then, have you tried famvir in the end ? did it do something for your EBV ?

 

[Judee]

So @heapsreal, I know I'm jumping the gun as today is just my first time trying Famvir but I think being ill for so long (decades) makes me so impatient to be well.

I know they say 4-6 months to notice something but I've been taking some herbal antivirals for a few weeks so maybe I jump-started it a little...hopefully. (praying, praying, praying)

So how long after you started this med did you notice anything positive? And what was the improvement that you noticed first?

Thank you for putting up with my antsy-little-kid-in-me questions.

 

[heapsreal]

So @heapsreal, I know I'm jumping the gun as today is just my first time trying Famvir but I think being ill for so long (decades) makes me so impatient to be well.

I know they say 4-6 months to notice something but I've been taking some herbal antivirals for a few weeks so maybe I jump-started it a little...hopefully. (praying, praying, praying)

So how long after you started this med did you notice anything positive? And what was the improvement that you noticed first?

Thank you for putting up with my antsy-little-kid-in-me questions.

I use to have crashes regularly. When i first started famvir, the first thing I noticed was after 3 months I didn't have a crash. I think about the 6 month mark I had a crash and was disappointed but I recovered alot quicker than I normally would from a crash. It was 6 months that I felt obviously better and maybe pushed harder and crashed. But 12 months was where I felt like an 8 or 9 out of 10, 10 being normal.
My recent famvir supply issues when covid started upset the apple cart. When I eventually got back on a regular supply of famvir, it took 12 months to get me to a level I feel well on.

Just keeping taking the antivirals each day, resting and praying.

 

[godlovesatrier]

Give it time judee. The main thing is whether you face side effects. If it doesn't give you insomnia absolutely don't stop it in my opinion. It absolutely wrecks my sleep.

Good luck.

 

[Judee]

When I take a full 250mg dose, I get very sore jaws. I think it's immune response from my paratoid/salivary glands. If I take only 125, I don't seem to get that.

I seem to react to things in these areas and the crimson crescent areas. I also think that's why so many of us develop Sjogrens and things like non-Hogkins Lymphoma. I talked about that in this thread: https://forums.phoenixrising.me/threads/swollen-salivary-gland.61371/#post-997864

@heapsreal and @godlovesatrier, do you think that's a sign it may be working for me? Earlier in this thread M1she11e (who hasn't been on the site for a long while) said Dr Dantini prescribed Famvir for HHV6 and that it did lower her HHv6 titres but didn't improve her ME.

Anyway, that's an update from me.

 

[heapsreal]

When I take a full 250mg dose, I get very sore jaws. I think it's immune response from my paratoid/salivary glands. If I take only 125, I don't seem to get that.

EBV is expressed in the saliva, so there may be a link.

Earlier in this thread M1she11e (who hasn't been on the site for a long while) said Dr Dantini prescribed Famvir for HHV6 and that it did lower her HHv6 titres but didn't improve her ME.

A few things we don't know with Mishelle, did it lower her titres down to normal range? Always the question of other co-infections , which Dr Lerner would look for if one wasn't responding to antivirals, especially bacterial co-infections such as lyme, mycoplasma etc. The other thing is the hit and run theory ie symptoms remain from the damage done from the infection not necessarily the ongoing infection.

What I took away from is that famvir does have effects on hhv6. I believe for me it has helped cmv as shown by lower cd8 lymphocytes.

I think famvir is atleast an option for those with cmv/hhv6 to try who can't afford valcyte or can't get a Dr to prescribe and monitor them while on it or don't want to deal with the toxicity.