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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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419309 tn?1326503291
I'll have to look into the current research and trials... thank you for the additional information.
I wish you best of success with your Alinia treatment... I hope it proves to be helpful for hbv as well!
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Avatar universal

still recruiting, it is a combo of alinia+lac.reuteri.alinia lowers bacteria and reuteri balance the good bacteria, very early to know outcome but these are all approved drugs so you might try them for soemtime and see if you get improvment

i have to say that i got the best improvment of life quality when i used heptech full pack products but i had to stop them because they also lower immune function during immune modulators like alinia or interferon

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419309 tn?1326503291
I wondered if you might have any additional information about the trial you mentioned using Alinia to treat hepatic encephalopathy?  Wondering if you might know what was used and the results of that trial; anything you could point my way would be much appreciated.
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Avatar universal

we use the generic version in hbv comm (we tested lupin generic and it was better quality than romarks), a member in florida got it at a lupin distro pharmacy with prescription.
generic is about 200usd for 180 pills but the price varies so much both at lupin distro pharmacies and online

in india the cost at the pharmacy for 1000pills is about 100usd, having a friend there can be very helpful...this is the only way i can afford 4pills a day
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Avatar universal
Thanks for that.  I'll look that over.  I'm SVR myself btw..but not everyone I know.  Thanks again, much appreciated.

Trish
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Avatar universal
The link below, posted by Mike716, lists several online pharmacies that sell generic alinia.  I hope that this helps



http://www.medhelp.org/posts/Hepatitis-C/Alinia-Nitazoxanide-Sources/show/1124364
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419309 tn?1326503291
He followed the Phase III trial protocol that was running at that time, 500mg at 12 hour intervals.  We had considered trying to enroll in the Alinia trial, as his treating doc was also recruiting for it at the time, but as a cirrhotic with hcc history he wasn't considered a good candiate for hcv trials, plus we found it wasn't worth the risk to be at the mercy of trial guidelines since doc was willing to prescribe it off label.
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Avatar universal
No....not so affordable as I thought. :(   What is the daily dosage please?
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419309 tn?1326503291
Regarding the cost of Alinia, without rx coverage we'd be paying about $1200 every 4 weeks -- certainly not what I'd consider affordable on a modest income...
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Avatar universal
nicely worded post re the 130 -  makes me wish I had a hat to take off - and thanks for the good wishes.

As far as I know there are 4 main sources of data of ntz in g1s:
stealth-C2, stealth-C3 and the Basu EASL10 study. A recent free access review by Prockros includes ntz citations:
http://www.ncbi.nlm.nih.gov/pubmed/21180601

For G1s NTZ is no silver bullet,  nevertheless it shows a consistent improvement among hard to treat patients.  My hepa was  dismissive, saying 7-8% improvement in odds at best. Fortunately my PCP was more accommodating. Personally, I'll take the  small improvement. Same with SAM-E - no silver bullet but it clearly seems to improve response. Same with high dose RBV.

One thing you learn as you go around the block is that the standard of care is designed to optimize the average outcome. This is good for the overall health care system but does not necessarily help one as a patient. The PI must still do the heavy lifting but anything that safely improves one's  ifn response is worth considering.

Re adding the PI late, as mentioned in an earlier post, there's no data I know of. Nevertheless, PI monotherapy has been shown to consistently knock VL down a couple of log units within days. As shown in a study Bali posted recently, relapse is due to getting to eot with too many remaining  infected cells. If you can knock your remaining virus down by between 99% and 99.9% it seems reasonable to expect relapse odds will diminish.
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Avatar universal
Actually, there is at least one good study that has been posted in the past, showing a good result with PPC being used with interferon.  It was posted by HR (Hepatitis Researcher)  I can't remember right now if Ribavirin was used in the study or not.  It was from quite a while ago. I haven't heard of anything recent.
Joe did take it some of the time on his last TX but it got hard to afford with all the other draining expenses we had at the time so we let it go.  He started right back on it after TX failed, and still takes it now.  
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Avatar universal

forgot to menthion also PPC in heptoshield stopped any gastro disturb but i think this supplement is not good with interferon
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Avatar universal
Thank you!
Several years ago, when Joe was taking Alinia, I asked the Pharmacy Dr. at Romark if he thought  using a probiotic would help the gastro trouble, he didn't think so then.  The Hepatology Researcher that use to frequent Medhelp thought it would be important, and I  went with his recommendation to use probiotics.  He was recommending the Culturelle brand at that time, because it had undergone a lot of research showing it  to make it all the way through your body.  I guess many aren't effective because the digestive juices destroy it.  I'm not a good scientist and only can get the overall outlook but my terminology isn't the best.  
I will be reading over the information you pointed out.  Even if we never use Alinia again, probiotics are important in their own right.
I appreciate your help,
Ev
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Avatar universal
http://clinicaltrials.gov/ct2/show/NCT01135628

i have started from here, then searched all studies on lactobacillus reuteri which looked one of the most potent on gut/immune function and then tried it, it is very expensive here 15euro per box but it worked

i also tried
http://www.galenotech.org/erborist/Enterogermina.pdf
worked too but a little less than reuteri

i tried couple of others that didn t work at all, don t remember the names

i guess that every combo with interferon can benefit from alinia since it henances interferon response.interference with antivirals should be very very unlikly, there are in vitro studies on it, i guess contacting romark directly can help on this


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Avatar universal
I'm relieved for your sake that the financial cost regardless of what they'll be appear to be manageable. Lord knows the challenges are sufficient aside from that. When you have time, on the Alinia costs.  I could look it up at the online pharmacies also, it just occurred to me.  Cost and availability of PI's and DAA's is the big question mark, isn't it.  And we shall see.  
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419309 tn?1326503291
Fortunately if that option were to present, PI added to Alinia and SOC, my husband's current rx coverage is great: as long as the doc writes the script, no cap on cost, just a reasonable co-pay.  I know everyone will not be as lucky, but at least cost is not a deterrent.  

I'll have to dig for the out-of-pocket cost of Alinia tomorrow (buried somewhere in the monstrous pile of rx papers) if no one else pipes up with good info.  What the cost of PIs and DAAs is anyone's guess...
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Avatar universal
You put me in a position where I felt I needed to defend myself by stating I jumped in and inititated the dissusion of mixing Alinia with the use of a DAA and you further commented that no one was suggesting that.  If you interpret me asking why you made that statement and expressing to you that I don't have to seek approval as personal and arguementative then you're right, no further discussion is necessary.
In no way did I see it as a case of right or wrong, agreeing or disagreeing, just a question based on my observation which I felt merited an explanation. Because of your last response I feel exactly the same way, any discussion regarding this matter would be pointless.
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Avatar universal
The bonus that Alinia has over the PI's is perhaps cost.  The PI's will not be cheap and may not be accessible to everyone.  I know when I was getting ready to do SOC, I was starting to look into bringing Alinia in from Mexico as it's an OTC there - ending up in a clinical drug trial instead brought any further efforts to a halt.  If you can get it as an OTC in Mexico, then I'm thinking it's not very expensive here?  If someone could post how much it does cost, I'd appreciate knowing.  Thanks.
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Avatar universal
LOL - I only saw your comment after I posted saying I wouldn't be taking the trouble. :)  Your request has been met. :)
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Avatar universal
It's not too much trouble but seems rather pointless.  I'll respectfully decline to continue on that particular point any further.  It seems a bit pointless to continue to debate on what Ev meant or didn't mean...and who is right about it. Opinions aren't right or wrong, they're simply opinions  We see it differently.  I'm good with that.

As for comments meeting approval and all that....I find this beginning to get personal and  argumentative for no good reason.  As you say, we're here to toss our thoughts and learn. Taking it personally when someone has a different point of view than you is counter-productive in my opinion.  Not interested in pursuing this line of discussion with you.
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419309 tn?1326503291
Appears somewhat that the favor Alinia had 2 or 3 years ago is being eclipsed by PIs, DAAs and other up and comers.  The new technologies of targeted therapies has the spotlight and certainly has the potential to steal the show if approved, but if the FDA drags its feet on approval it's possible more hepas will start looking back on Alinia with more interest.
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419309 tn?1326503291
May I request that you not take the trouble?
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Avatar universal
If it's not too much trouble could you please explain what your interpretation of Evangelin's statement " but it probably would increase his chances of Teleprevir getting him an SVR" because I took "it" to mean Alinia so I find it unreasonable of you to accuse me of jumping in and changing the direction of the discussion.  You know what my reply to that was because you quoted me. Evangelin later clarified her comment on another post so my other question to you is.... ideally, in what direction do you think the conversation should have gone?

After all, despite how you see it, this is a discussion group and we're all here to learn and toss out our thoughts.  As far as I know my comments do not have to meet your approval or that of anyone else.
__________________________________________________________________________

Lovebird, you are exactly right.  Developing a resistance to a DAA should be a big big concern, especially for those with cirrhosis.    
  


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419309 tn?1326503291
The flip side of this discussion would be interesting fodder, too:
considering PIs are increasing the SVR rates for relapsers and null-responders but not as significantly as naives... and there are considerable higher risks with PI use than with Alinia use (which has been approximated to improve SVR by 10% in previous g1 non-responders...)

Perhaps they'll be takers of Alinia+SOC as a 1st attempt, especially if they're CC or CT, and PIs as a 2nd try? Just saying...
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