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Avatar universal

Alinia, SOC, and adding PI when approved

I had my meeting with Dr. D. at Mt. Sinai, and ran the treatment protocol that was discussed in a previous post:
He thought that adding the PIs later in treatment would not make much of a difference, as they were designed to be used early.  He also was not too excited about adding alinia, stating that he believed that the previous studies (as cited by Willing in the previous post) did not porvide large enough samples, did not include relapsers/nonresponders, nor mentioned the severity of fibrosis.  Dr. D. and hIs NP seem to be encuraging me to wait for the PIs, and to treat the co-morbid  problems that I have ( cryo with vasculitis, encephalopathy).

I AM SOOO CONFUSED! ...  I have consulted with two excellent hepatologists, both teaching hospital affiliated, and I now have 2 different opinions on how to proceed at this point.  I thought that I had a plan, and was gearig up for the battle, and now I am not so sure.

On a positive note, he did  have a fibroscan machine there, donated to him by patients, and is runing a clinical trial that includes bloodwork and a scan every three months.  Not so positive is my score of 29.1, but I already knew that I am cirrhotic.
11 Responses
179856 tn?1333550962
I think (thought) that alinia was best used when treating geno4 but didn't do too much other than that?  Also of course PIs are to be used early in treatment that is the goal to be UND as early as possible therefore giving you better odds at success. I don't think anyone is ever going to add them after week 12 or something - it just doesnt make any sense.

Since you are cirrhotic already how long does he plan to wait would be my question.  We all do hope the PIs come out in 2011 but we've also been hearing that they'd be coming out next year next year next year since like 2008 or so.  There is really no guarantee that they will come out or when (although we assume they will and shortly too).

You get worse odds of success being cirrhotic but also have less watch and wait time. What a mess.  What did your last biopsy say - it said cirrhotic for sure?
979080 tn?1323437239
i was there in march did 2 fibroscans in one week of ea other with different operator
because i did not want to believe the result but it was consistent.
they told me they give all their geno 4s alinia.
Avatar universal
NYgirl:  Definitely cirrhotic, at least ten years, as per my last biopsy in 2000. And, I've got  the enlarged spleen, low platelets and banded varices to prove it :)  

I've been waiting for something better, as the last treatment was hell on wheels, but I don't know if I can wait and not decompensate while waiting in the warehouse.  The folks at Mt. Sinai think that approval will happen during the first few months of next year, and the drugs will be available by June. So close, and yet so far... You are right - it's a mess.

Bali:  Did they ask you to be in a clinical trial for the FS, or did you have to pay for it?  I'm geno 1a, but figure that the alinia will improve my odds.
979080 tn?1323437239
I paid for the first one. Since the result was a lot better than what I was given in Germany
7 months prior , I called Mt. Sinai up and asked for an explanation.
Their readings had a 100% success rate but they did rescan me a week later
with a different Dr. (all working under Dr. D). Got same result.
The thing is here it is not FDA approved so you won`t get an official medical report
(in writing)
like I got in Germany. So I faxed the german report to Mt. Sinai it had had the scan
image and everything and asked Mt. Sinai to please find those results on my liver.
They could not ! twice with different people.
My liver histology has improved!
If you have to treat now I would still through Alinia in the mix.
and I would predose Riba for 2 weeks as well.
For me it had practically ZERO side effects , maybe you tolerate it as well
so why not.
Kittyface on this forum is geno 1 and SVRd she swears by it.

Avatar universal

Bali05:  That's great that your liver improved!  I do plan to include alinia and predose riba as you suggested.  I think that I would add the alinia even if I was doing the PIs.  

My dilemma is whether to start at the end of summer -- after vacation -- or wait for  better odds with the risk of decompensating.  Then, on the other hand, I guess that there is the possibility that tx will cause me to decompensate.  I'd appreciate any opinions from the folks here.
Avatar universal
I also used Alinia and was UND at wk. 2. The sx were nothing compared to Riba.  It is approved for use in infants.  No reason not to add it as far as I'm concerned. jm
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