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135456 tn?1301437624

Haven't visited the board in quite some time but....

was wondering if people here have begun to add Alinia to standard treatment? I did a few years back and it worked. I had treated 3 times before to no avail but the  4th time with Alinia added it worked. just wanted to pass this info along. Ask your docs about it. I was a guinea pig when i tried it and probably one of the first in this country to use it.
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Avatar universal
Hm...seems more a question to be asking yourself at this point. I've already moved on.
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475300 tn?1312423126

"No matter...the discussion has moved on, hasn't it."  

Will you let it?
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Avatar universal
Yes, brought up....however, I'm inclined to agree with Eureka...insufficiently interpreted.  No matter...the discussion has moved on, hasn't it.  
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419309 tn?1326503291
Thank you for your good wishes.  I do not deny it's always recommended to follow medical protocol, but there are patients who face situations that have no clear cut  guidelines.  Sometimes out of the box thinking is not fear or desperation, but as you point out, just a strong will to survive and win, in conjunction with or in spite of medical studies.  Alinia has the potential to be encorporated to SOC, but seeing that it's only in Phase III trials and has been trumped in terms of timeline and SVR rates by the PIs, the lack of FDA approval at this time for hcv tx , rather than other factors, makes it unlikely the Western medical community will be jumping on board anytime soon, imho.  Like you, most of the medical community, is skeptical and follows protocol.  If we get that far in a few months, perhaps I can report back on how "out of the box" docs can be with PIs added at the end of tx.

lovebird99:
Unfortunately, for previous null-responders or relapse cirrhotics facing end-stage, the concern is not a chance at another PI.
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Avatar universal
"Because I am a skeptic by nature, what I don't understand is why NTZ has not been accepted or become part of the current standard of care to date or is being considered as part of triple therapy by the hepatitis medical community across the board given the following facts: "

I think that's actually rather simple.  NTZ is an off label drug that's still in clinical trial for use in treatment with HCV.  It would be very strange indeed to include a drug in HCV SOC that is still in clinical trial for use in HCV treatment.  Not sure it will ever be considered SOC nor does it need to be. SOC would be something that would be used for every patient.  It can be used as an add-in on a case by case basis.  Maybe naive Geno 2 wouldn't feel the need to add Alinia for example but perhaps certain hepatologists would, depending on other factors, such as IL28B, IR, etc.  The fact that it's in clinical trial and showing good results means there is potential for including it as part of individualized therapy when it makes sense.
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475300 tn?1312423126
8 hours ago:
by Evangeline
I asked my husband's Dr./P.A. if it would be possible to get Alinia to go with the Teleprevir cocktail as it made his interferon response so much better than without.

I think it was brought up..............just saying
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