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212705 tn?1221620650

HepResearcher reg. Alinia

Hi HR
I am @ 38th week of tx. At 25th wk  (vl 1350)  my Hp Dr. doubled the pegasys. At my 10th week went from riba 1000 mg to 1400 mg. What I would like to know...is do you think Alinia, at this juncture, may be a benefit? ...and if so...is there some paper that I could bring to my dr.?
This is my 3rd time txing. I did monotherapy Intron-A, I was in clinical trials with riba/interferon bundles and became UND...I would appreciate your opinion.
In a little over 10 years...I went from zero liver damage to Stage 2, Grade 2-3 bridging fibrosis. I am 44 y.o and the future doesn't look so bright.
Thanks for anything you can tell me...or any suggestions will be much appreciated.
Sincerely
Yvonne

ps. Getting a PCR this week
34 Responses
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Avatar universal
MEDICAL PROFESSIONAL
If your PCR comes back very low but not UND, then you could ask your hep to add the Alinia for one month - this should be free of the risks of not being able to use it later - and it might get you UND. If it gets you UND, then you continue.You have gone quite far, this holds a new and realistic chance to add an entirely different blockage for the virus, that is at this point already very weakened.

To Jim: Where is the downside to this beyond 4 more weeks added to 38 weeks, with the upside of having a real chance to a pleasant surprise? Beyond that what is there other than waiting for Vertex/definite geno1 Alinia results, she already has max riba and double dose IFN.  I am sure you realize that all he Dr.As and Js and Ss do not have any secret weapons up their sleeve beyond max riba, max IFN, extended time.
Helpful - 0
Avatar universal
Hi, sorry you are going through this. Is the hepatologist you are seeing at the U of P last name start with an "R" ? If it is i'm susprised because he is suppose to be very good and up to date on the latest protocols. if your next test is detectable i would stop, regroup and then try and get into a trial for non-responders in the next year. sounds like you are a tough to treat and need a cocktail of drugs (present combo + new drugs) to beat this. hang in there and best of luck.
Helpful - 0
212705 tn?1221620650
This is why I usually don't ask ?'s on this side...'cause believe me, I carry around enough anxiety...
I am doing everything I can. My txing Hep Dr. was @ the AASLD...I went over the NP's head and wrote to my dr..'cause I couldn't discuss studies w/her. ...and I was not too happy about travelling 2 hours (One Way) on public transport to spend all my time w/her and three minutes w/him.
I changed dr's (gastro to Hep) early in tx 'cause they didn't order a PCR before txing or at the 4th wk...though I did ask.
My last PCR vl was 1350 and yea, Zazza, it was after the 24th wk.. I was supposed to have one last week...I lost my job and wanted to jump from the nearest bridge..and didn't make it to Quest. I am gonna go tomorrow.
As soon as the results come in, I will e-mail my dr...and ask him why/what/when....what else can I do folks??? I am not willing to stop w/o Dr. giving me the ok....I've gone too far...to just take everything into my own hands/or those with much knowledge on forum, and make that decision...  
I know you mean well Jim...but now I feel sick to my stomache and anxiety ridden and there's nothing I can do about this tonite. Well, maybe a xanax will help...
Y
PS Once again....after the 24 wk PCR...I asked to stop tx. If anyone thinks I'm a masochist (sp?)...and enjoying this horrible treatment...guess again.  I have done all I can thus far and I am aware of what it's doing to my mind, my energy, my body, my gums, everything..i know. Double Dosing 'stinks.

The reason I didn't study to be a doctor was 'cause my brain (on a norm) is not wired for this....I'm more of a right brained kinda' gal and with this particular medical issue it seems that we all have to be. It stinks!
Helpful - 0
156085 tn?1204326985
First let me with you the best with the rest of your treatment! Hope you can add Alinia to the tx. Sounds so promising...

How about taking Alinia even AFTER INF treatment to ensure a permanent SVR? I mean, who knows? Maybe Alinia would work on releasing the rest of the wild traces of virions who may the culprit in those that relapse?
Just a crazy thought on my part...

Best wishes,
Ginger :o)
Helpful - 0
Avatar universal
He advised you to DD with no follow-up viral load tests? And he's a hepatologist, not a gastro?

Anyway, given that you're already seeing him, he wouldn't qualify as a "second" consult. Maybe you can put a rush on your January appointment with the other hepatologist?

I still wouldn't wait on that viral load test. Maybe your primary care can write you an rx, if you treatment doctor won't.

-- Jim
Helpful - 0
Avatar universal
Correct me if I am wrong, but I seem to remember you have had PCR's done later than 24th week? And that you were still detectable?
Helpful - 0

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