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26471 tn?1211936521

Alinia

Has anyone here tried Alinia?  I've seen data for naive patients but nothing on NRs.  Would appreciate any hard data other than the stuff on Romark's website.  Thanks!

Miles
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Avatar universal
Yes, I intend on getting frequent PCR's this time using Quest Diagnostics assistance program.  Will definitely keep everyone updated through journal.

Best to you as well,

Kittyface
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Avatar universal
I used the dose in the HCV Egypt trials with Alinia as monotherapy = 500 mg. twice daily.  The bottles contain 60 tablets so are one month supply.
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Avatar universal
that is great. nice to have our own little alinia trial here at MH :-)  i'm pretty sure i could get my doc to prescribe it so i will wait for your reports. i hope you are able to get frequent pcr's especially the 4 week. how did you know what dose to tell doc to prescribe? wishing you the best
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Avatar universal
Copyman: I'm not in a trial.  My doc thinks outside the box and is writing for Alinia plus SOC at my request.  The downside is he's not a hepatologist so I'll have to watch lab results carefully and consult the med help family.  I tried but couldn't find a hepatologist willing to write for anything not officially approved for HCV.  I realize it's risky but have learned so much here I feel confident I can stay the course.  As an aside, I wanted to take Rebif interferon beta 1 (less sx, same efficacy) instead of peg but the manufacturer won't donate it because I don't have MS.

Orleans, thanks for the compliment about my gumption but IMO it's the folks who are doing SOC that really have gumption!  I took Alinia b/c I'm a chicken and afraid of sx.  Re: PCR's during Alinia tx, I only did one at the outset which was 17 million and had I felt a consistent improvement planned to do one at 3 months.  Since that didn't occur and having no insurance I didn't do another PCR.   AS an aside, I did the Alinia last year and this year my VL is lower at 9 million but since it fluctuates naturally it's impossible to know whether Alinia caused the decrease.

I plan to do more PCR's when I start tx in a few weeks so I'll keep everyone updated.  I'll be the Alinia guinea pig, snort snort.

My best to all of you, when I read your stories my heart goes out to you.  I don't know where you find the fortitude to tolerate the things you do but you have inspired me.  

Kittyface
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Avatar universal
You are very cool! You make me smile.Hang tough girlfriend.
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Avatar universal
Hey, Did you do any PCRs while taking your shot w/ Alina? Any impact on VL? I for one applaude your gumption! jerry
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Avatar universal
hey kitty, sre you starting a trial or is you doc going to dose alinia on top of the combo drugs? if it is your doc going off label to prescribe the alinia that is great! love to hear a doc that will take a chance. best of luck, and please do keep us posted.
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179856 tn?1333547362
Honestly during treatment my stomach couldn't have handled something like Alinia, AT ALL.

Be careful of it's own uh side effects before starting SOC and anything or you could end up with a big tummy ache!
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Avatar universal
Hi, I took Alinia for 3 months last year as a monotherapy -- I had mild nausea the first few days and then experienced increased energy and well being.  It occurred to me at the time that interferon and Alinia would pack bigger punch but I wasn't ready to take the plunge.  

I am now ready.  Am starting SOC plus Alinia in a few weeks.  Will keep everyone posted on progress.

All the best,
Kittyface

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137025 tn?1217764741
There is a bit of data about Alinia from AASLD that is positive, but from what I can sort out it was not a long term study....how's Jersey?  I sometimes correspond with Adam Feuerstein..the biotech columnist from the Street.com, he mentioned that Alinia caused a big ole buzz at the Boston meeting.  Perhaps because it is already FDA approved...as in we know it won't kill anyone, so investors were all over the news Romark put out.  But then investors love to grab the first shiny thing they see and then are prone to dropping it quickly for the next glittery toy, so what the hell do they know.  

Last time I saw my million dollar specialist, I asked about Alinia, but his world was rocking from telaprevir and the question didn't register.  I guess with Susan's news from AASLD, I'm gonna have to rock him a lot harder to get somewhere now..my time seems a bit shorter now and the need to tx again just grew proportionally to the bad news about null responders.  "Interferon resistant"..dreadful, dangerous words now, when I thought a PI would fix me, they didn't scare me so much.  But now I think they are the supreme bad joke..and only a few of us get the punch line.

Nice to hear from you again.  Don't be a stranger, there are some pretty smart folks here.  Me, I just have the rep for being the stock chaser, plus whining sometimes, but this place is better than a room full of liver docs, better info and here, they look you in the eyes when they talk about the virus.  I can respect that.

Willow

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