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Increasing Famvir Dose

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Jun 27, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have been on famvir 250mg twice a day for awhile now and it has helped but this year i feel the 3 steps forward i had improved with famvir , i have now gone back 2 steps, i dont think im as bad as pre famvir but struggling working part time.

    I am working part time but due to several circumstances im going back to work full time after i have had 2 weeks leave. I have got a script from my doc for valcyte but at this stage just cant afford it for a few months atleast. I have a wife and young family that rely on my income and while working part time i have gathered a few bills, im stuck between a rock and a hard place at the moment.

    My plan is to use Famvir at 500mg twice a day for a few months and hopefully get good improvement like i did when i used a lower dose of famvir, and hopefully i can manage fulltime work. After a few months i should be able to afford valcyte which i will use at a low dose along with a low dose of famvir. Fingers crossed i notice improvement with this increased dose while on leave but realise its going to take a few months to notice the difference.

    Cycloferon i still find helpful, but like most immune modulators we need to have regular breaks from them, so will keep it up my sleeve for when i need it. This aussie winter my family all came down with a cold/flu, my wife needed a couple of days off work so probably more of a flu. I started to get a runny nose and a sore throat, this is when i started adding cycloferon with extra vit c. Normally i would get this flu and be in bed for 2 weeks but i think the cyclo has helped me avoid this flu, although the cfs has got me by the short and curlies.

    What doesnt make sense in cfs is that alot of treatments are expensive and to afford them we need to work and without these treatments we really struggle to work at all. This only happens because its not a recognised condition. In australia if it was cancer this sort of treatment would be free and income would be covered by salary insurance or government sickness benefits, so we could rest and recover. it sucks!

    cheers!!!
  2. maryb

    maryb iherb code TAK122

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    heaps - It sure does suck , it must be hard for you having a family to support, hope the Famvir works again for you and you manage to work full-time okay, take good care of yourself though.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thanks for your encouragement!
  4. anniekim

    anniekim Senior Member

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    Hi Heapsreal,

    I am sorry you feel you are going three steps forward and two steps back. As Mary said it must be so hard dealing with this illness with no state support and treatment and with a young family to support

    Good luck with the increased famvir dose, really hope it helps.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks Annie,

    i will keep soldiering on and trying to rest hard, hopefully win lotto.

    cheers!!!
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Last night i was pondering and weighing up my options financially and brain storming some ideas to reduce my debt and general cost of living especially if i had to stop work altogether etc i think most know how it go's. I didnt get alot of sleep last night but the sleep i did get was sound, now its only been 5 days on the higher dose of famvir, 250mg twice a day to 500mg twice a day and today was the best day i have had in 6 months. I wasnt running marathons or anything physical but felt like i had my personality back and didnt have a headache and that dead to the bone fatigue, even my kids were getting annoyed at my whitty responses to them, gee im funny. It may have been a fluke but i havent been anywhere near like this for a long time and the only thing i can think of is the famvir increase, i wasnt expecting to feel anything from this for a couple of months, so its caught me by suprise. Fingers crossed we will see what time brings, i have another 2 weeks off work to keep resting up.

    cheers!!!
  7. TinyT

    TinyT Senior Member

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    Good luck Heaps!
  8. aquariusgirl

    aquariusgirl Senior Member

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    It does suck. I recall that Montoya was quite insistent that people rest. He made that plastic surgeon guy..gasolo .. on prohealth...take 6 months off work when he went on Valcyte.

    It's a dilemma.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A plastic surgeon has alot more behind him then me, lol. Those couple of days of clarity have gone but still feeling better then the lower dose, but im not really expecting much from the increased dose for atleast a month or two but those 2 days of clarity were a boost to my confidence that im moving in the right direction. Still feel like crap but have been worse, lol.

    If i can maintain working full time for a couple of months i should have the money to order the valcyte, im sure some other bills will poop up.

    cheers!!!
  10. Bethinoz

    Bethinoz

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    Hi Heapsreal

    I really feel for you and understand how quickly you slip towards ruin if you can't work! I hope that you can get back to full-time work and that you find that Valcyte is the key. I watch your journey on anti-viral with interest and heres to hoping you get a break! I think it's hard on the kids. My daughter frequently says I like it when you are happy and not sad. But when one is working and feeling like shit its hard to keep positive!

    Beth
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for that beth. yes its a bugger when the only energy you have is for work and then u come home and collapse while the family live their life around you like your the old pet dog curled up in the corner. But every so often u have a good day where u feel like your old self personality wise, maybe not energy wise and u can interact with the family and have fun and enjoy each others company, i can see my kids lift when i feel better, its a good feeling that i wish i could do everyday. Maybe it has taken cfs to make me realise how important it is too.

    I also want to say that theres always someone worse off and feel sorry for the people who dont have family and are house or bed bound. I dont think at any level of functioning that cfs is good for anyone. Too me working with cfs is a struggle that takes away from my family and me, being myself cause im too knackered and have to work to keep the bread on the table. For others cfs has taken away the opportunity to work and to have a family, either way its a suckfull condition and made worse by the fact that cfs/me isnt really recognised or treated adequately.

    But we cant just stop, so we go one day at a time and try every dam treatment and cure that hopefuly gives us more of those days where parts of our old self comeback. So im hoping valcyte works, so these untried treatments give us hope but if it doesnt i havent lost anything(only money,lol) and i move onto the next thing. Theres also hope when u see more highly recognised cfs docs going full steam, like montoya, KDM,WPI and now Dan peterson and also because he is partnering up with bond uni in australia, thats abit of extra hope for all the aussies.

    One day soon we will all be sorted, cfs/me will be a easy to test and treat as a dam ear ache, hopefully we have done something to path the way.
    Crikey! after rereading all that i should run for politics.

    cheers!!!
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its been over 2 weeks since i increased my famvir dosage which is 500mg twice a day. It has definately gotten rid of that constant headache i had and generally feeling a little better but also havent beeen doing a great deal other then resting up as i go back to work in 3 days. So we will see how i hold up then.

    I came accross something interesting yesterday as i reread dr lerners cfs/antiviral study. I wanted to check on the dosage of famvir he used, this he says he did if people couldnt tolerate valtrex for some reason, now i thought the dosage he used was 500mg 3 times a day, but its actually 1500mg every 6 hours. Thats 6000mg of famvir, that dosage would work out more expensive then valcyte. People seem to get good results using lower doses then lerner, at least we know we have alot of room to bump them up.

    cheers!!!
  13. Grape Funk

    Grape Funk Senior Member

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    hey heaps

    im not so sure about 6000mg number. Here in the states i can't even get more than 1500mg a day prescription wise. I even saw Annecavan here on the forums post to her blog that she was taking 4g valtrex a day, had kidney or liver problems, and lerner put her on 1500mg famvir.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ok, maybe it was printed wrongly, i looked at it several times and saw 1500mg every 6 hours, probably 500mg every 6 hrs.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Not long after i last wrote on this thread i had to lower my famvir dose(250mg twice a day) as the place i order it from were on holidays, which is strange for a company but you get that. Yesterday i recieved a supply of famvir so i kick started with 1000mg dose and within a few hours had some clarity, i dont know if its the famvir or just the way cfs is but i dont get alot of moments of clarity so Im leaning towards the famvir. I did have a bad night trying to sleep with leg pains and woke this morning and had 500mg dose. Today i have had a worse then normal headache, so Im starting to think the higher doses is causing an IRIS response(immune reconstitution syndrome). The start of this thread when i increased my famvir dose it reduced my headaches but my insomnia started playing up as well as fatigue, i sort of improved and stabilized when i went back to 250mg twice a day.

    Maybe this higher dose is getting better tissue penetration which is causing a die off/ IRIS. Im thinking of maintaining at 250mg twice a day and pulsing higher doses until i feel comfortable at the higher dose??? I know herpes viruses like to hang out in the nerves and the leg pain i get at night and some today is a nerve type pain, also getting some back pain different to my old man back pain. Its strange because when i very first started famvir i never got any negative responses.

    Anyone else find that they got a die off when they increased dosages?? Im going to call this pulsing of av's 'blast and cruise' as im not going to come off but will cruise at a lower dose, does anyone else do this?

    cheers!!!
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I thought i would do a general update on things. I have written in other threads that i felt worse most of this year and tinkered with famvir doses etc but it seems that it was a severe sinus infection causing me problems, so abx and lots of saline nose sprays and a steriod nasal spray have helped heaps! I honestly thought i was going to have to give up work and look at some sort of pension, i really felt like i had taken a backward step or two. I now have treated the sinuses but i think i still have to keep an eye on it and its very close to 12 months since i restarted famvir, im still on 250mg twice a day which is doing the job plus money is tight. My sleep is always up and down and i really need to sort out some sort of consistancy with it, i would really like to get off sleep meds, so not sure there but will talk it over with my doc when i see him. I get another lymphocyte sub set test tomorrow and results in a week, so i will be interested to see that and if i can keep them down for 6-12months may considered going off famvir and see what happens. I havent used cycloferon for awhile and at the moment dont feel the need but it does give a nice boost to the immune system when feeling like crap, i think it helped me last this long with sinus infection actually.

    I have been tolerating work ok, not as many sickies and not wiped out at the end of the working week, this is only the last few weeks though. So i have been more active on days off which is easy to do when i normal just sit at the computer or on front of the tv. I actual did a weights work out yesterday for the first time in over 6 months, nothing huge, actual embarrassing compared to what i use to do, but woke today with all these new aches and pains and i thought bugger im crashing but then i remembered i did a work out yesterday and u dont get a sore chest from a cfs crash but bench press would do that. As it stands things seem to be going well at the moment and im cruising, other then trying valcyte if i could afford it, im happy with the treatments im on, LDN sounds interesting but will leave it on the back burner for now.

    cheers!!!
  17. SirArthur

    SirArthur

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    I appreciate the update, I've been following this thread.
    Glad you are feeling better. Taking care of my sinus problems (somewhat) is the only thing that has helped me over 4 years.
    I'm also considering starting famvir, doing all the research I can, never been on an AV before.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Ok I got my lymphocyte subset test results back today, for the first time in 4 years they have all tested within the normal range, my previous test was in march and still abnormal, so my doc has said before with test results that there can be a lag period before feeling better. I am surviving work better but outside of that im spent and resting for work, still not really able to exercise or be very active, so my general health is the same as my previous blog i have quoted. My plan at this stage is to stay on famvir atleast another 6 months and then maybe look at coming off antivirals but thats a maybe. Hopefully i start to see more improvement in general wellbeing and of course SLEEP better too would be nice, lol.

    Still feel abit confused as i dont feel as well as my test results say but like i mentioned before, it can lag behind, lets see what happens next.

    cheers!!!
  19. chloe

    chloe

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    I took the genertic famvir from Dr. Kogelnick. I was sick beyond what I can imagine---- yet he did not check me for any toxicity (WBCs, LFTs, and kidney function), and in fact told m to take more. The drug is madeby a company in Indiai --- Aurobindo. I called the FDA and they told met to fill out a form. I cannot imagine how any patient suffering rom erely genital herpes could tolerate this durg. I could not tolerate een 250 mg twice daily, yet Dr. K woud tell me to take more. I believe the dosage on one bottel was 3 gm 4 times daily. Outrageous. I am so disappointed in him. Did anyone else have a bad reaction to the generic form of famvir????
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have used the brand famvir, cipla and lately mcloeds because its the best price i can find. I cant tell the difference between the different brands, all have helped me. 3gm x 4 a day is a high dose and maybe why you would be feeling sick. Some people do get a die off type reaction as their viral load drops there immune system starts to work and helps clear infections and this can make you feel worse, but if you feel that bad then you have to weigh it up, maybe even alternating your treatment until its more bearable like 5 days ons and a few days off etc until you can manage these symptoms. I only took 250mg twice a day and had know problems at all, i did try 500mg twice a day but couldnt tell the difference. I have been on famvir for 2 years and so far my liver and kidney funcion test have always come back good but i also think NAc and lipoic acid have helped as well to protect the liver. If your having a reaction to 250mg twice a day, maybe it really is getting those bugs causing all the problems. I dont think drug resistance is as big a problem as people think like antibiotics, could possibly try dosing 1, 2 or 3 days in a row with a few days off, just slowly work on it. Although its not as strong, have u tried valtrex, maybe better tolerated and after being on it for a few month and hopefully lowering EBV you then might be able to go back to famvir for its broader range of action on other viruses.

    I hope you are able to work something out,
    cheers!!!

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