Infergen and/or Alinia for non responders

[burned74]

My situation is similar to many millions of others as I am Geno 1, have had hepc for 35 years and responded partially but did not clear with SOC (treated 4 years ago). I was stage 2 in 2004 before treatment.

I am considering another biopsy this year to check on progression. If I am still stage 2, then I will wait for new drugs in maybe 2 or 3 years. However, if I have progressed to stage 3 or even 4, time might not be on my side. Knowing what I have learned (especially on this site), I know I can do a couple things differently.

Predose Riba and take with fat.
Predose Alinia ( although I have not seen anything that would tell me that it is effective for Geno 1's)
Heavier dose of Peg or Infergen for first month.
More frequent blood tests.(last time I only had a 12 week)


Has anyone seen any  Infergen SVR rates for GT 1 non responders?
Has anyone seen any more info on Alinia for GT1's, except the 3 people that were included in a single clinical trial?

Any other comments are welcome

[Deb_c430]

No most do not understand, compare it with the reg interferons, which are no fun. But this is a whole other world.  

The only person I know who finished and SVRed is, Joe and I will be there to...  

I get the same my LS, they either say it does not work, do not understand,  or the horror!    

its ok I am hanging in there, though all the things you said have come true, It's a lonely world, lately I just find my place and go there,


Your a treasure, sending you hugs and much love,

Deb

[Lonestar823]

My dear Deb, I'm so happy to see you too.  Yes, indeed, we have a very small circle.  When I did the infergen I only knew of one other who had tolerated it, finished and svrd.  I made timid efforts to ask about it on the board while treating but mostly all I got was horror!  ; ]  It kinda is a horror though, huh?  ; ]   (Very nervous giggle here)  Now I know a few more and you and Joe will be included. My life is back in balance for the moment.
'til soon,
Your
LS

[Deb_c430]

I am so glad to see you both, Joe I thought you disappeared!  Lonestar, your my  inspiration.

I am still hanging in there, but I have found the quiet LS,  Not functioning well.

I am on neupogen and procrit, riba.  No it is hard to find info on infergen.   There are a few doing also alinia. I do not know of anyone else doing both.     I am over a year now, have till end of May.    

Again so good to see you both!  Deb

[Lonestar823]

Joe, Just clicked on and went back to burned's post.  Jeez, I was so happy to read your post.  Somehow being wrapped up in every day life again, I lost track of you.  Yippie Ki O!!!!  You cleared a couple weeks sooner than I did.  You're right too about doing the infergen.  It's nasty, but certainly doable.  It dragged me down pretty hard the last twenty four weeks but I always thought of it as my most powerful weapon.  And turns out it was!  My very best Joe.

Lonestar

[joemc34606]

I failed on interferon twice, I have been on infergen forabout a year and was cleared at 20 weeks. My doctor says 48 weeks after you cleared so we are going with that. So in june I should be done, over the last year my white and red blood count has dropped but I was put on nuepogen and procrit to bring those up. The side effects seem better now that the virus is gone but they were bad in the beginning. Everyone is different with the side effects so its hard to go by what everyone else feels, I own a busy auto repair shop in Florida and its hot, I havent missed a day of work while on this. My opinion is try the infergen it worked for me. Good luck joe

[Lonestar823]

I did the infergen for 73 weeks. I was g1 and did 15 mcg daily with riba six months after failing Peg Intron.  It's not for the faint of heart but it can work for some of us.  I am SVR two years now.  It doesn't have a great reputation due to it's severe sides, much worse than the Pegs.  More people stop treatment than finish.  My world and knowledge of Hep C is quite small, however, of the six people I know who were able to tolerate infergen's sides and finish treatment all have Svrd but one.  

[orleans]

There was a 44 paitent arm in one of the Egyptian trials that had 3 G1s. It was 36 weeks Peg&Alinia only, no Riba, 80% SVR.(All 3 G1s SVRed) Small, yes, but hopeful. I am tx naive G1 treater and was UND at 2 weeks with Alinia/SOC. The failed treaters in the original Egyptian study had a 25%SVR rate compared with 5% in the control.(all G4s) With its' low sx profile seems like a worth while bet to me. jerry

[evangelin]

My husband is txing for the third try this time with Alinia added.  It doesn't look like he is going to make it to undetectable and will probably be stopping soon with another failed attempt.  On the bright side though, he was a lot better responder with the Alinia than he was without it.  He had a 3 log drop by 12 weeks which was much better than the other times.  His viral load stalled out at around 250 around 20 weeks though.  Joe is a geno1 and he has cirrhosis .  If we could have tried Alinia before he had cirrhosis, it might have worked.  Another helpful key was to find a Dr. who wouldn't dose reduce him unless they absolutely had to which they haven't had to.  Dose reducing caused Joe to have a viral breakthrough with Infergen on the second go around.  This Dr. at a teaching hospital was also more aggressive with the riba dose than before.  Even though it doesn't look like it will be enough, at least he had a fighting chance this time.  Many Doctors won't be aggressive enough to win with a marginal responder.  Who wants to go through this without the best possible chance to win.
Best wishes,
Ev