Famvir...here I go.

[Rrrr]

hi Ruthie24, i'm starting the famvir in 2.5 wks. how are you doing lately? please report!

and CAN we take antacid while on it?

best,
rrrr

 

[Ruthie24]

hi @Rrrr- I'm doing fine with the Famvir. Can't say that's it's a miraculous drug for me so far, but I'm tolerating it fine. I'm definitely better than I was when I started it, but again, I don't know if that's not just a normal cycle in the disease.

As far as the antacids, I don't know if we CAN, but I DO. My docs know I'm on famotadine as part of a mast cell cocktail and none of them have said not to take it or mentioned any concerns about it.

Good luck to you as you start it. What dose are you using?

 

[Rrrr]

thanks for your update! so you have been on it for 2 months now? i hear that the first 2 wks you feel like you are going to die! true?

i'll be starting at 500 2x/day.

 

[Ruthie24]

I'm not sure exactly what the time frame was for how long I felt badly on it. I know it took awhile for me to get up to a high enough dose where the doctor thought I was getting enough for my immune system to be getting enough assistance that I started feeling better rather than worse on it....if that makes sense. His explanation was that when you first start, you get just enough help for the immune system to start revving up and make you feel really sick and then you eventually get to a "tipping point" where you get enough in your system to really make a difference.

My doc does massive doses though so you might do fine with the lower doses. Seems like famvir is one of the easier ones to tolerate from what a lot of people have said?

 

[heapsreal]

thanks for your update! so you have been on it for 2 months now? i hear that the first 2 wks you feel like you are going to die! true?

i'll be starting at 500 2x/day.

for what its worth i didnt feel worse on famvir at all, valcyte though is a different storie.

Ruthie it is hard to tell if u have improvement on av's as u mention it could be a normal good run your having but after 6 months though u should be able to tell.

good luck,
cheers!!!

 

[Ruthie24]

Well, I did have an interesting conversation with my daughter tonight who said that she thinks I've been more like my my old self the last few weeks. She said she hadn't been aware of just how much I had changed until she had seen me being more like myself these past few weeks. I think she's referring to cognitive function, although she wasn't even able to totally put her finger on it when I was trying to ask her what she she was referring to. She said that in the past couple of years, she thought I was different just because she was getting older, but now that I'm back to more of my "normal mom" personality she realizes how much I had changed and she was "really glad to have me back."

So again, not sure if it's the Famvir or not, but nice to hear. When you have so many different symptoms going on in so many different systems, it's hard to keep track and know what's doing better and what it's due to.

 

[Rrrr]

great news! thanks for that outside observation from yr daughter!

 

[Pam123]

So glad to hear that your daughter is noticing a difference!