Famvir or not?

[maryb]

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?

 

[satoshikasumi]

At normal doses, only Valcyte, Vistide, and Foscavir have a lot of activity against EBV. These medicines have pretty serious side effects.

Famvir and Valtrex might work against EBV only if your doctor prescribes a dose much higher than the recommended dose.

All antivirals have to be taken for at least 3 months, and ideally for 6 months or more. The Stanford study of Valcyte found that patients took a whole year before they felt better (!)

So, the upshot is that you need to have a lot of self-discipline to get better with antivirals. You are probably not going to feel better right away, and you will probably have to put up with some side effects. And, it's best to have a doctor who knows what she is doing.

 

[maryb]

Thanks for that info. You see the 'self discipline' bit is the problem, I manage to have a little quality of life, can't work or socialize but can get out a couple of times a week to the local supermarket, walk round a little bit outside where we live and potter a little in the garden on a good day. Okay not much but much much better than many who post on here. If I take any supplement or medication that makes me feel ill, we're all familiar with the toxic feeling, pain increase, headaches, nausea etc, I immediately become completely housebound, rarely moving from my chair or bed.
So that is the choice for me normally?? and I usually discontinue whatever it was I started taking.
Part of me thinks for that reason I will never get better. But I have read a few good reports on Famvir and the side effects seem less than many other av's, I still have a stash of Valtrex I ordered a while ago going to waste, so would just want to try Famvir for a month really rather than order another whole load.
I thought there would be more people on it for some reason??

 

[heapsreal]

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!!!

 

[satoshikasumi]

Note that lower doses of Famvir may still be helpful if you have herpes 1 or 2, but that higher doses are usually needed to affect EBV, CMV, or HHV-6.

It has very few side effects. Even at very high doses, i.e. 2,000 mg four times a day, most people tolerate it. Of course, I have heard of some people who do get side effects.

It is cheap at the normal doses but can be quite expensive if you are taking the extra large doses. Insurance will usually pay for AVs if your doctor confirms that you need them.

 

[maryb]

satoshikasumi - I live in the UK - the only tests I have had are private ones which over the past 4 years have shown activated EBV on 3 occasions and CMV on 1 (that is active infections)
Even the private doctors here will not prescribe avs for long periods, unless things have changed, maybe I need to ask as I would rather be under the care of a doctor , sometimes you just get so fed up with having no treatment that you need to make an educated decision yourself.
Heaps - thanks for relating your experience, I knew I'd read someone was on it, do you think taking the Valtrex for so long knocked th EBV out before you started on the Famvir?

 

[Patrick*]

Note that lower doses of Famvir may still be helpful if you have herpes 1 or 2, but that higher doses are usually needed to affect EBV, CMV, or HHV-6.

It has very few side effects. Even at very high doses, i.e. 2,000 mg four times a day, most people tolerate it. Of course, I have heard of some people who do get side effects.

Sato, thanks for that information. I have been on Famvir for about 2 months, but only @ 500 mg twice a day. So your posts concern me, and I would like to look into it further.

Do you mind if I ask: What is the source of the information you cited above? Is there a study you can point to, or a source you can link? I would be interested in learning more.

Thanks.

 

[heapsreal]

satoshikasumi - I live in the UK - the only tests I have had are private ones which over the past 4 years have shown activated EBV on 3 occasions and CMV on 1 (that is active infections)
Even the private doctors here will not prescribe avs for long periods, unless things have changed, maybe I need to ask as I would rather be under the care of a doctor , sometimes you just get so fed up with having no treatment that you need to make an educated decision yourself.
Heaps - thanks for relating your experience, I knew I'd read someone was on it, do you think taking the Valtrex for so long knocked th EBV out before you started on the Famvir?

it depends how long you were on valtrex for but i would bet that when u stopped it eventually reactivated.I dont have herpes 1 or 2 just ebv and cmv like u maryb. I think its worth doing a trial of antivirals for 6 months to see if it helps. WHat i find is that when i go off av's i do go backwards and get painful neck glands etc, so i have been on them non stop for 2 years now.
Its not cheap but this could help http://www.magicpharma.com/index.php?cPath=33_188&osCsid=97384da4658c523f28b8f422b1424bf7 i use the 500mg x60 and cut them in 1/2, seems to be the most economical for me. I have tried higher doses and i cant say i noticed any difference so stuck with the lower doses. Others here who have had success with ebv, cmv or hhv6 did well on 500mg twice a day.

cheers!!!

 

[satoshikasumi]

See DeClecq et al
Antiviral agents active against human herpesviruses HHV-6, HHV-7 and HHV-8
Med virology reviews

Available at:
http://onlinelibrary.wiley.com/doi/...ionid=31813E565BDDF8BDF1277D8219331659.d03t01

Also, if you consult with infectious disease specialists who treat CFS including Dr. Lerner and Dr. Kogelnik they will generally prescribe a higher dose for famvir or valtrex

 

[satoshikasumi]

Also, note that only Vistide, Valcyte, and Foscavir are FDA-approved to treat CMV.

No drug is approved for EBV or HHV-6, but these viruses usually respond to the same compounds as CMV.

For further references, check the HHV-6 foundation website at www.hhv-6foundation.org
Note that with HHV-6, variant A is harder to treat than the more common variant B. Variant A may respond only to Vistide and Foscavir, and not Valcyte (!) There is a published paper that suggested this.

 

[heapsreal]

See DeClecq et al
Antiviral agents active against human herpesviruses HHV-6, HHV-7 and HHV-8
Med virology reviews

Available at:
http://onlinelibrary.wiley.com/doi/...ionid=31813E565BDDF8BDF1277D8219331659.d03t01

Also, if you consult with infectious disease specialists who treat CFS including Dr. Lerner and Dr. Kogelnik they will generally prescribe a higher dose for famvir or valtrex

i think the problem with higher doses is that it isnt cost effective for those of us that live outside the USA where health system is run differently with insurance companies. countries like australia and the uk where this would be classed as an off label prescription would then have to pay full price, it would then be cheaper to use ampligen if it were available in our countries.
Experience from people on here have found famvir 250-500mg twice a day effective against all the herpes viruses, seeing viral titres and lymphocyte sub sets come down. long term i think these lower dose would be alot more liver friendly then higher doses. Famvir has a short 1/2 life like most antivirals but does have a long intracellular 1/2 life approx 18hrs from memory, so dosing twice a day appears adequate. I think the higher doses lerner advises is because of the drugs 1/2 life, but many seem to get results without using such high doses. it comes down to economics i guess.

cheers!!!

 

[maryb]

Thanks Heaps, and for the links - looking like I might try the 250mg Famvir. 6months can I do it????
sat - I don't have a problem with HHV-6 and I think the EBV is far more active than the CMV so based on that I'll give it a go.

 

[heapsreal]

Thanks Heaps, and for the links - looking like I might try the 250mg Famvir. 6months can I do it????
sat - I don't have a problem with HHV-6 and I think the EBV is far more active than the CMV so based on that I'll give it a go.

good luck keep us posted. Also keep on the look out for things to improve immune function too. I believe immunovir is easy and cheap to get in the UK, be worth looking into.

cheers!!!

 

[m1she11e]

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.

 

[satoshikasumi]

Hey don't gang up on me! I am just a patient. Top US docs such as Peterson, Kogelnik, Montoya, will tell you that HHV-6 and EBV infections are very difficult to treat and not very sensitive to most antivirals. This is just the science.

However, patients with low NK cell function usually have multiple herpes infections, including HHV-6, EBV, CMV, HSV-1, and HSV-2.

Herpes 1 (the virus that causes cold sores) is neurotropic just like HHV-6. Kogelnik believes there is a subset of ME patients where HSV-1 is really the most prominent infection.

lower doses of Famvir can be very effective against herpes types 1 and 2. But you usually have to go to higher doses to get the more complex herpes viruses.

 

[satoshikasumi]

Some docs wouldn't use any dose of Famvir for EBV or HHV-6. For example, Dr. Peterson's preferred drug is Vistide.

 

[m1she11e]

Satoshikasumi- I am in no way ganging up on you. I just see that you are taking an enormous dose of Famvir. I cannot find anyone else taking that high of a dose or a doc recommending that high of a dose. If I could find any information I could try for a higher dose and fight my insurance to get it. My doc is very good with me as he knows I research and he trusts the information I bring him. I just cant find anyone dosing Famvir that high. If it is necessary, or preferable, I would take whatever dose it took!!!

Believe me, we are aware that all of these doctors have different views on the best way to kill the virus'. There is a lot of disagreement as far as what anti virals really work for what. I knew that Famvir was not supposed to be effective against HHV6 when I started taking it. Dr. Dantini (not saying he knows all, he is just the Doc who said that Famvir would work without the side effects of Valcyte) swears that Famvir is effective against HHV6 and that has been several of our experiences on this forum as well. This, in despite all of the research you have sited and that we have read as well.

I only commented because if I was in the early stages of trying to treat with anti virals, as I was many years ago, I would be discouraged if I read that Famvir was only effective at a dose I would be hard pressed to get a prescription for or even afford. I just want to make it clear, as do some others here, that we have lab tests that show that Famvir is effective, at the lower doses we stated against many of the virus' in question.

I personally would like to see a more effective anti-viral, that is readily available without traveling to the worlds best CFS docs, become available!!!

 

[heapsreal]

Hey don't gang up on me! I am just a patient. Top US docs such as Peterson, Kogelnik, Montoya, will tell you that HHV-6 and EBV infections are very difficult to treat and not very sensitive to most antivirals. This is just the science.

However, patients with low NK cell function usually have multiple herpes infections, including HHV-6, EBV, CMV, HSV-1, and HSV-2.

Herpes 1 (the virus that causes cold sores) is neurotropic just like HHV-6. Kogelnik believes there is a subset of ME patients where HSV-1 is really the most prominent infection.

lower doses of Famvir can be very effective against herpes types 1 and 2. But you usually have to go to higher doses to get the more complex herpes viruses.

not ganging up just letting u know our experiences with famvir which i think has a broader range of action then its indicated for. I have wondered if american doctors prescribe higher doses of av's and other meds as maybe there is a kickback for prescribing higher doses, then insurance companies have to pay pharma more money??? just saying this as many who get results from av's on lower doses are generally from outside the USA or are people in america who arent covered by insurance so buy meds online??

Another thing i have noticed is that many with hhv6 and ebv have hhv6 titres come down with valcyte but not ebv, ebv seems to be better treated with valtrex and famvir. My thinking is that valcyte works for cmv/hhv6 but not that great for other herpes viruses.

At the end of the day its a cost/economic decision to use lower doses and some of us have found them just as effective.

mischelle i wish u had a link to the info u recieved from your doc on famvir being effective for other viruses but the company didnt put any money into marketing it as they didnt think it was a big money spinner for them.

Totally agree, they need to spend more money on effective antivirals, just hope they dont try to sell them for a fortune like valcyte.

cheers!!!

 

[m1she11e]

Hey Heaps. Dr. Dantini told me that he spoke to the researchers who were in the labs doing the clinical studies on Famvir. The market was in need of a better drug for HSV 1 and that is what they were getting approval for. At the time, no one cared about HHV6. According to Dantini they told him that Famvir was effective for all of the Herpes family of virus' we speak of on here and Parvo as well. Dantini was looking for a cure for his own CFS/Fibro at that time and was doing a lot of digging. There was no Valcyte at that time. He continues to use Famvir as his first anti-viral of choice for all of the Herpes virus'. At the time we were treating my HHV6, EBV, and CMV. He could have been lying??? All I have is his word of mouth. He does do phone consultations for a fee of course. I didnt like the side effects of Valcyte though and was willing to give Famvir a go. My HHV6, as I have said, DID come way down. I have also mentioned that my Doc LOVED Valclyte and kept trying to switch me over insisting Famvir could not get in where Valcyte can. He just recently quit prescribing Valcyte at all. He said Famvir is providing the same results without the side effects. This is huge as he has treated over 500 people with Valcyte.

Here in the United States, I dont see getting a doctor or insurance to prescribe or pay for dosing much beyond 500mg, 3 times a day. If a higher dose could get deeper I would be more than willing to give it a go. I still need to have some kind of information for my doctor and back up for my insurance to even stand a chance. This is why I am trying to figure out if others are dosing SO high, and if it is necessary. If those virus' are digging way deep and I can get them up with an atom bomb of Famvir, Im all for it.

Satoshikasumi, can you please provide links that might help me understand the high doses you speak of?

FYI, my doctor (not saying he has the answers but he does really try to help us) says for me to take 2 of the 500 mg pills at once every few days. I guess hitting with a higher dose at once from time to time gets in deeper. I think I should have him explain that again and I actually have not tried it.

I also agree that anti virals might be a forever thing if we dont figure out how to get out immune system back on track...

 

[Xandoff]

satoshikasumi

My experience was that my Doctor added Famcyclovir(sp) 500 mg twice a day on top of Valcyte. I ended the Valcyte after 14 months and I am now a candidate for GcMAF because of my Nagalase levels. Although I discontinued the Valcyte I am still on the Famcyclovir. What was interesting is that I added the Famcyclovir 500mg 2X a day after I had been on the Valcyte for six months. The Famcyclovir really made an improvement on my cognitive issues. I could and can think better on Famcyclovir! I don't question the why of it because it helps. If you check my home page you will see I am XMRV positive and have all the evil chronic su-infections of EBV, HHV and CMV etc etc etc......Hope this helps. No side effects on this med for me. Good Luck Satoshikasumi.