HR........Alinia ?????

[ladywhy]

I have been txing for 43 weeks. Double dosing started at 25 wks. 1.5 x weight based riba. Results of PCR today is VL of 14. I am seeing Hep Dr. on Thurs. He is willing to prescribe Alinia after I sign a release form stating Hosp is not liable? I am concerned about starting at this point due 'cause I may become resisitant to it and in the future???  Also, how long should I tx with it....it looks like I am doing at least 40 more weeks of double dosing pegasys. I am pretty anxious on what to say to dr. as I am clueless.
Thanks for any and all help.
Yvonne

[sfbaygirl]

From what I garnered from HR's response, this is a suggestion from the Egyptian study for geno 4's on Alinia.  Another 40 weeks is a long long time. Are you ready for this?  As a stage 2, perhaps pushing on another couple weeks to see if you get UND with Alinia, you will still have to do almost another year to possibly get SVR, from my take on what HR says. The official EOT would be  when? I think that to mean after week 48? or would that be after the extra 40 weeks?  Add 3 extra months of Alinia to that...which from what I hear Alinia is not so bad. Also as his "educated guess" is only a guess, he as a physician and can't really tell you what to do. He thinks "outta the box" unlike many Dr's, but can't really guarrentee  success in these things...we are in uncharted waters here....so it is YOU that has to make the choice, not him. He is only giving some advise as to some studies and his educated guess. This is NOT a medical opinion, only a guess and a very educated one at that given the studies. Many of us here have read the studies and have educated guesses too. Please don't take HR's opinion as the only one, as these are uncharted waters. Thankfully we have him to give us opinions that other Dr's won't....doesn't mean that he is giving you a standard of care dx. He is only giving his best guess, given the data he studies. I am protective of him and don't him to suffer if this doesn't work for you. He puts himself out here for us and we can't take advantage of his out of the box thinking....hey we love him for this!!! So please take this advise as an option, not as the be all, end all. Rely on your Dr. for this. Yeah, I am a protective mama over him and don't want his wisdom to hurt him. We need him and want his great suggestions, These are suggestions by him are only that and take them as such, okay?  

Linda

[Hepatitis Researcher]

Pressed for time so i have to say this brief.

There is no concern for breeding Alinia resistant variants at your current low viral load.
If you add the Alinia now and get to UND within 2 to 4 weeks it will be a good sign and if you are indeed willing to push it for another 40 wks as you say and keep the Alinia on board, taper down IFN after official "EOT" and extend the Alinia three month beyond the end of SOC you might have a fighting chance to escape the fate of relapse. As you know this is just an educated guess, extrapolating the perceived powers of Alinia from the geno 4 results to your situation, for which there are no data.

[sfbaygirl]

Just wondering, if I understand correctly, you are on week 43 and have not had a UND yet?  How long have you double dosed? Perhaps the Alinia is a great option, but is it wise at week 43?  Dunno. Sounds a bit late IMO.  I would like to hear your stats and how long are you planning on tx'ing?  At 43 weeks without an UND and a geno one, I would say you need to go another 48 weeks maybe? Does this sound right?  

Wishing you the best! I would love to hear your plan.

Linda

[ladywhy]

I know your intentions are always to be helpful. There just are no studies reg. double dosing...and extra riba...long term...very long term txing....so I will just keep goin' til I break out in song!
(don't wanna give the wrong impression...I could lose a few...but.... :)

The only sx I wanted (quick 20lb weight loss) and it 'aint happnin'....what's with that!

Hey, anybody else find red meat (steak) kinda repulsive while txing???  

[jmjm530]

Sorry about sounding like a broken record, but I was trying to tie togetherwhat appeared to be HR's input from a previous thread -- but for all I know he may still support your efforts to continue on.  I do wish you well in your battle to get rid of the virus and will keep quiet unless asked. Truth is none of us have the absolute answers and opinions do vary.

-- Jim

[ladywhy]

Thanks for the link.

[ladywhy]

I know we alway get back to this. I am getting in to seeanother Hep Dr...at another Univ. Hosp. who is supposed to be excellent. I want to know about the Alinia. Wouldn't it be great if I added this to the mix and after 36 more weeks...found myself  with a SVR? I have txed 3 x. I don't want the viral load to skyrocket and start again. My dr. is aggressive..and I am handling it and my labs are ok....so that's where I'm at. Every single time I post reg. my trratment...you say the same thing, and it's not helpful. I respect your intelligence and knowledge but I also respect my Hep Dr's. who is the head of the hepatology department of a University Hospital in a (kinda ;) major city...Philli.
I am from New York so...can't see what's so major about this one.
So on that note...can anyone help with the Alinia Question? What's the deal with the resistance factor??? Gauf...do you know?

[jmjm530]

I just pulled a thread when you posted at week 38. And while I didn't understand continuing then, HR apparently saw merit, however it you read between the lines it appears that even HR wasn't willing to advise you going beyond week 44 unless there was a "pleasant surprise" which I imagine meant UND. Don't want to put words in anyone's mouth, especially HR,  but here's the thread to go over,  and if you do value HR's  opinion then maybe you should PM him or PM SFGal or Forseegood who are in contact with him. Given that you're only a stage 2, you still have time if this doesn't work to recoup and fight another day perhaps with better and more effective drugs. And hopefully, the time you already put into tx will have at least slowed or even regressed your liver damage.
http://www.medhelp.org/posts/show/365349

[jmjm530]

I've forgotten your stats and details of your previous posts, but I think I remember you decided to go against common wisdom and treat beyond week 24 while testing positive for the virrus, with the idea of getting to UND as soon as possible and then extending if UND-- but I may be mixing you up with someone else.

In any event, if you're still detectible at week 43, then I really question why you're still treating, as the odds for SVR seem remote even with the severe double-dose regimen. Did you get any medical guidance on such a long-term double-dosing strategy while detectible at week 43? Personally, at this point, I would find one or two good hepatologists and listen to their advice.

-- Jim