Alinia

[jmon]

Is anyone out there on this. Since starting my VL has gone from 1 mil to 6 mil and my alt and ast are e;evated and they had been normal for 4 years since finishing riboviron and peg and then relapsing.This all is making me very nervous nevermind that it's almost 800 dollars a month with insurance reimbursing 80%. Now dr wants to add amantidine and riboviron. I got the amantidine but the insurance won't ok the ribo without peg. He talks about ordering both and just taking the ribo but I am afraid if this guy is nuts my insurance company won't come thru for my treatment again.Has anyone had levels go up on alinia and then come back down? Never mind the cost again. The ribo is 230 a month and I have no idea what peg costs as I had a better insurance plan before.And the ribo had my RBC's so low I was on procrit almost the whole time. I think one shot of that is about 500. I don't know whether to just throw my arms up and forget it and hope my alt and ast go back to normal. I might as well have gone on a drunk! Haven't touched the stuff in several years.Help. I need advise.

[kittyface]

Hey mon, I've been on Alinia for 4.5 months and will do blood work next week.  At first symptoms subsided but have felt sick again for last month.  I'm disappointed at the reports of increased VL and enzymes.  Will report to you all next week.

[Bill1954]

No problem. If you haven't done so already, you might also try at Janis and Friends; someone here posted that there were several folks on the Alinia trial posting there as well. Here is the addy:

http://janis7hepc.com/

Best of luck,

Bill

[jmon]

I have read that article. The fact that the data has not been put to any scrutiny is now becoming very interesting. Could Romack be leaking doctored information to boost price of stock? My doctor says he has seen some others have an increase in VL too. Funny that the 2nd half of people in Egypt had no effect at all. I am limited due to insurance policy being local and I am in a rural area. I went to get weekly labs and found that the doctors office hadn't called in a new order even tho I had reminded two people in his office and the Dr. that one needed to be faxed in.My insurance company has ok'd the riboviron but I am afraid to start it cause I don't think anyone in his office is paying any attention to labs and I know it screws with my Hb big time. I have decided I am going to take m vacation and get the monthly labs Aug 17 and just decide then. Meanwhile I will take the now once a day Alinia and the Amantidine. Thanks for the info. Still looking to hear from someone else on Alinia.

[jmon]

thanks bill1954

[Bill1954]

Hi there,

"Hepkitten" posts on this board occasionally and I believe is invoved in the Alinia trial. She posted today on the thread "antibiotics and hep c"; I tried to flag her down to this post; if she doesn't respond, you might try to wave her down yourself. Just a thought,

Bill

[jmjm530]

Ice:  just hard when I have one braincell left.
-------------------------------------------------
LOL. I don't make the rules nor do I enforce them. THAT being a thankless job here I want no part of. Just thought I'd give you a heads up  because lots of threads and posts have been deleted for that reason. BTW that's one braincell more than I had for much of treatment :)

[iceboy]

Yes, Im sorry. I was panicking because the link wasn

[jmjm530]

Thanks for the post but in the future try and post the link and not the complete article. I say this because sometimes they zap entire threads if you copy and post an entire article. It's the weekend, so hopefully no one with zap powers will see it. Hope this finds you well.

-- Jim

[jmjm530]

Seems like the alinia isn't doing much good. Viral load goes up and down so that isn't surprising but you say your liver enzymes have gone up since starting with Alinia -- that isn't good.

A VERY quick google shows amantidine to be an experimental drug with a bad track record. So your doctor is combining one experimental drug (amantidine) with another (alinia) -- both without track records -- and then adding ribavirin? I dunno :)

Are you seeing a liver specialist (hepatologist)? If not -- or even if you are -- you might consider a second opinion regarding your treatment.

Lots of more conventional options out there, but not knowing your background hard to advise plus none of us are doctors here. Good luck!

-- Jim

[iceboy]

www.tbo.com/news/money/MGBJWY5B3KE.html

this is something I saved on alinal the other day. Tampa firm going big.