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Famvir...here I go.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ruthie24, Mar 6, 2013.

  1. Ruthie24

    Ruthie24 Senior Member

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    Had a prescription called in today for Famvir for me- 2,000 mg 4x a day? Seems like a massive dose. Think I may have to work up to it over a bit of time.

    Keeping my fingers crossed that this will be helpful. Seems to be a mixed bag of success from reading others' stories on here.

    I keep reading about immune modulators as well, but my doc doesn't seem to think they increase NK function much. Seems that just doing the AVs doesn't do it either. Not sure what else I should be considering here.

    Have been having a rough time with OI issues recently so am supposed to start IV saline next week as well. Too much all at once? Hope not!
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good luck, keep us posted.

    Does seem like a massive dose but if your insurance covers it then u can store some for later maybe. I would be tempted to start of at a lower dose, something to talk over with your doc. i found 250mg twice a day enough, other doses i have heard others use commonly is 500mg 3 times a day. Your doc probably knows something we dont about famvir, nice to pick his brain some.

    cheers!!!
     
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  3. Ema

    Ema Senior Member

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    I don't think you will have any trouble with starting IV saline along with Famvir...but that is a whopping dose! Hopefully you have awesome insurance because many companies have quantity limits on Famvir. Mine restricts use to 500 mg twice a day, for example.

    I think doctors are finding that NK cell activity may not be the marker they once thought it was...in that some really sick people have high NK cell activity and some relatively well have low activity.

    I have personally used immunomodulators and found them helpful - particularly Nexavir for over a year and I'm now doing an inosine pulse.

    Ema
     
  4. RUkiddingME

    RUkiddingME Senior Member

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    Hi Ruthie, yes it is a massive dose of Famvir but you should do ok if you take it gradually like you said. I was put on that dose initially. First week 2 tablets 4 times a day for first 7 days then 4 tablets four times a day for next 14 days then I even had to go to 16 grams a day!! for 30 days then back to 8 grams. Starting at 4 grams a day initially gave me massive headaches after each dose so I backed off to 1 tablet every four hours and for a couple of days then back to the 4 grams and I was ok. I didn't feel nautious until I was on the 32 pills a day (who wouldn't? LOL). My labs remained normal the whole time. Best of luck and if you have trouble at the beginning just start slower and build up. Good luck! :)
     
  5. Ruthie24

    Ruthie24 Senior Member

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    @RUkiddingME- Has he explained his reasoning for such high doses? I know he had said that the viruses seem to be hanging out in bone marrow and nerves, not in blood, so am wondering if he feels these amounts are what are needed to get into the bone marrow? Just trying to puzzle it out. Will ask him at my next appt. but was wondering if he'd already let you in on the secret. ;) Thanks for the tips on the meds. I did 2 pills twice yesterday and was already nauseated and dizzy so may have to start a little slower than 2, 4x a day.

    Really appreciate all the input. Thank you!
    Ironically I was having the first sort-of good day in months yesterday before starting the meds, so now of course my mind is doing the "what was I thinking of" routine..... ugh!
     
  6. lnester7

    lnester7 Seven

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    I was started 3 days ago on half a pill of 250mg for 2 weeks, 1/2 pill twice a day for 2 weeks, 1/2 3 times a day for 3 weeks, then 1 twice daily.

    Start/tritrate should be the ME/CFS mojo!!!! So far so good. Even when regular doctors dont specify I go slow. (My CFS doctor is extremely good and always goes slow)

    In the immune modulator side, I have been in it for 1 year and have normal NK cells now!!! Still ways to go but much better.
     
  7. Ruthie24

    Ruthie24 Senior Member

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    @Inester7- Which immune modulator are you taking? I think I am more in line with your doctor's way of thinking as far as the start low, go slow method. I tend to have lots of reactions to meds, although I'm able to tolerate many of them over time and haven't had any real allergic reactions so far.
     
  8. Ruthie24

    Ruthie24 Senior Member

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    @heapsreal- I will definitely be picking his brain some when I see him next time. Have a LONG list of questions. LOL
     
  9. Ruthie24

    Ruthie24 Senior Member

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    @Ema- Thanks for the info on saline and famvir. Any specific as to protocols for IV saline that you've found helpful?

    Kind of a bummer that the one marker that seemed to be a "good" marker for ME is now being questioned....NK cell function. Are there new studies coming out on that?
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think its a good biomarker for cfs but maybe not a good biomarker to judge improvement on. I know i had improved my general condition with antivirals but nk function did nothing, so i think it might be helpful to diagnose cfs. improving nk function improves cfs well thats hard to do but makes sense as nk cells fight viruses so its worth persuing it.
     
  11. Ema

    Ema Senior Member

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    Saline is pretty easy. I had mine in the hospital and they wanted to infuse it fast but I was happier at a slightly lower rate. So, I guess my tip would be to know that (as long as there is a pump) you have some flexibility on your infusion rate. I also liked at least two liters but your doctor will have to be amenable. Oh, and it's not a bad idea to test your electrolytes regularly (fasting is best).

    I don't know of another marker unfortunately. We sure need some!

    Good luck but you will do fine.
     
    Marianarchy likes this.
  12. lnester7

    lnester7 Seven

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    Imunovir
     
  13. RUkiddingME

    RUkiddingME Senior Member

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    Hi Ruthie: I was also placed on Famvir first because it is "safer" than Valcyte and I think he likes to try that route first as some patients do experience a benefit. Also because it crosses the blood brain barrier better than Valcyte according to him. I believe everyone gets a different type of treatment protocol(dosage) based on their symptoms and viral load. Good luck!:)
     
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  14. lnester7

    lnester7 Seven

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    Are you getting upset stomach on Famvir??? I am struggling w no appetite (NO COMPLAINS THERE) but also I am having acid reflux again which had gone away.:confused:
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think taking it with food would help, dont think it affects absorption much, i know valcyte works better absorption wise if taken with a fatty meal. certain ant acids i know they say not to use with antibiotics as it affects absorption but not sure about antivirals.

    Another tip if one cant afford higher doses of antivirals is to use a gout medication called probenecide an hour before u take the antiviral, it helps increase blood levels and half life on antivirals and certain antibiotics. Should talk this over with your doc and this could help if stomache issues which are dose related too.

    cheers!!!
     
    lnester7 likes this.
  16. Ruthie24

    Ruthie24 Senior Member

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    @Inester7- I had quite a lot of nausea the first few days. The doc had me back off to 1 pill 4x/day and I'm eating when I take it. Seems to be ok now. I'm already on a "mast cell cocktail" which includes something for acid reflux, which was prescribed by my POTS doc. I am having more stomach pain and joint pain now which I hadn't been having so much recently. Not sure if it's related to the Famvir or just a fluctuation in my cycle of symptoms. These aren't new symptoms, just things I haven't been having recently- until I started the meds
     
    lnester7 likes this.
  17. Ruthie24

    Ruthie24 Senior Member

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    Six weeks on the Famvir, still at the high dose. I am having more GI issues, but April is always a heavy GI-symptom month for me and this one isn't as bad as many have been. Overall, I am doing better but hard to say if that's due to the Famvir or just normal cycling in the disease as I had been in a massive relapse for several months and finally seem to be coming out of it somewhat. Not doing as well as I was last fall before the relapse though so haven't made THAT much progress yet. Once I got thru the initial "loading" side effects while starting the Famvir, I haven't had much in the way of side effects other than some GI symptoms and sometimes a sense of breath hunger shortly after taking it.

    Still getting IV saline several times a week which has been noticeably helpful as well.
     
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  18. lnester7

    lnester7 Seven

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    Nice to hear, I am doing great now too at full dose and loving it, Famvir took the brain noise away, and now that I restarted Imunovir I am doing great. In the GI issues I noticed an increase too but I got back to my kefir+collastrum combination and it went away!!! Try to eat soemthing that soothes yoru stomach everyday see if that helps. Good luck!
     
  19. Ruthie24

    Ruthie24 Senior Member

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    Yea Inester! I'm so glad to hear that you are tolerating it well yourself now! That's super exciting! Sometimes I think I just have so many symptoms and with their waxing and waning it's hard to get a real sense for what's just normal disease fluctuation and what's the result of treatments I'm doing. But I'm definitely keeping up the Famvir for now.
     
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  20. RUkiddingME

    RUkiddingME Senior Member

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    Hi RUthie, so nice to hear you are tolerating it ok. I hope you can experience some progress real soon! Two years ago when I had very low blood pressure, IV's saved me. It's like life was being pumped into me temporarily, I could walk a little better etc. Good luck!!
     

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