Out of touch for awhile, does anyone know if they came up with something to replace riba?

[Mister beagle bailey]

Hi all,

Well,as you all know I've been out of touch for awhile here on the forum and was wondering if there is any thing new to replace the riba for those who can't take it, like me.  How everyone is doing well.

Beagle

[FlGuy]

Here's a short article.  Interesting, note the name of the author

http://www.nature.com/ncpgasthep/journal/v4/n1s/full/ncpgasthep0691.html

[nygirl7]

You little riba hater you!   ;)


Believe me, if they came out with something I would have gotten ahold of you asap.  Whether you were posting or not I would have emailed you if I heard of anything that would have made it a better treatment for you with your Thalessemia.

I promise.

[Mister beagle bailey]

Thanks for the article by Dr Scfiff.  How many weeks do you have left? Is it 2?

Bob

[Mister beagle bailey]

Where have you been, Deb?  I answered your posts but then I realized your home computer must still be fried from your kids.  LOL

How are you feeling?  I'm so glad your SVR, and I know you are!

Bob

[FlGuy]

10 to go.  More than 2, but a whole lot less than the 46 I was staring at 9 months ago.

[Mister beagle bailey]

How is your HGB holding up?

Bob

[FlGuy]

When I restarted had a plan with hematologist to maintain hgb between 11 and 12.  Been using Aranesp and have been hovering around 11.5.  See hemo doc tomorrow and think I'm a quart low.

[Mister beagle bailey]

While txing, I had bone pain probaly from the procrit but now that I'm off the meds 1 year now I still get bone pain in the ankle area and it's red with some swelling.  Does anyone else have a problem like this or know whThanks,

Beagle Bailey

[Mister beagle bailey]

Is that a new drug?  Does it have the same sxs as the procrit?

Bob

[FlGuy]

...is a man-made form of the protein human erythropoietin (ee rith row po eh tin). Aranesp® works by stimulating your bone marrow to make red blood cells.

See aranesp.com

I've read a few people who have used it (SFBay, I think).  No sx's that I've noticed - but I did not use procrit the first time around.  Hemo administers, not an rx for me.  Result of increased riba 800 to 1200.  Expensive stuff, about $2k a pop.

[Mister beagle bailey]

2k a pop, the procrit was expensive too.  I'll ck out the site and see what they say about the sxs.

Thanks

Bob

[Bill1954]

Hi Bob;

It’s good to hear from you again. I checked with clinicaltrials.gov and there is a Taribavirin trial recruiting in the Los Angeles area:

http://clinicaltrials.gov/ct/show/NCT00446134?order=1

Unfortunately, a history of thalassemia or other hemoglobinopathies (even if the hemoglobin is normal) is noted in the exclusion criteria. It still sounds as if PI’s are your best bet for now. Have you talked with your doctor about a course of PEG-IFN monotherepy? I think this would probably be accepted as SOC in terms of insurance coverage, but it might be to no avail given your previous relapse. Even still, possibly something to consider and discuss with your doctor.

Talk care,

Bill

[Mister beagle bailey]

Thanks for the site, I will be seeing Dr Schiff in Oct. at the University of Miami.  Do you know if there will be a trial there?

Bob

[Bill1954]

You might want to call one of the numbers listed on the page I linked and pick their brains about other locations; I know nothing about this other than the info posted on that page. My doctor was excited about this drug a couple of years ago, but is seems to have lost impetus due to attention given to PI’s, etc.

As a GT-2 relapser however, I’d ask Schiff or his staff about the numbers (if any available) regarding IFN monotherepy response rates. He would be the man in the know.

Take care,

Bill

[willing]

if you're shopping around for non-riba ifn additives you may also want to consider  joining HCV-796 clinical trials (see thread below).

Here's  the abstract from their presentation at EASL in April:


"Results: The mean baseline HCVRNA level was 6.41ogl0, and 66% of
patients were infected with HCV genotype I . PK parameters for HCV-
796 administered with PEG were generally similar to those observed with
HCV-796 monotherapy. At all doses tested, HCV-796 when combined with
PEG reduced plasma HCVRNA levels to a greater extent than PEG alone.
At day 14, the mean reduction in HCVRNA ranged from 3.3-3.5 loglo in
the combination groups vs. 1.6 loglo in the PEG group. Activity differed
by HCV genotype. Mean reductions at day 14 for genotype I ranged
from 2.6-3.21og10 in the combination groups vs. l.2loglo for PEG. For
genotype non-1 the respective reductions were 3.5-4.8 loglo vs. 2.6 loglo.
At HCV-796 doses of 250mg q12h or higher, combination with PEG
resulted in 33-67% of genotype 1 patients with reductions from baseline
>3logl0 on day 14 (13-17% below 50 IUlmL). For genotype non-I, 67-
100% had reductions >31oglo on day 14 (50-75% below 50 IUlmL).
Common adverse events in all groups were those typically associated with
interferons, including headache, chills, rash and myalgia. There were no
dose-limiting toxicities observed through the highest dose of HCV-796
tested.

Conclusions: The combination of HCV-796 and PEG provides antiviral
activity across multiple HCV genotypes that is greater than either agent
used alone. Clinical studies of more long-term administration are needed
to determine if these effects are durable."

[FlGuy]

Regarding willing's comment.

http://www.clinicaltrials.gov/ct/show/NCT00367887?order=11

Think this means UM and Shands in Gainesville

[susan400]

I wish him luck with Shands.  I found them very non-responsive to my needs on more than one occasion.  3 different times, they were either rude and blew me off, or have ignored the fact that I did send the records that were finally requested by them.  Mind you, they requested these records like 4 mon. ago, prior to me getting accepted into my current study.  I sent them the day after they requested them.   I know that they received them because I overnighted them with signature requested.  But, they never even acknowledged receiving them.  I've had a much better experience with Mayo.  

I'm sure that there are others who may have had a different repoire w/Shands.  So, I wouldn't rule them out.

Susan

[FlGuy]

A long time back my tx doc wanted me to consult with either Shands or U.Miami.  Insurance would cover Shands, not UM.  Although UM had it's own bureacracy, Shands was tougher.  I ended paying out of pocket at UM, just to make things easier.

[amommy]

I hope you see this post!  How are you?  I lurk more than anything these days, and was without a computer for a long time, but it made me so happy to come here and find a post from you!  How are you doing?  Did you end up moving?  Fill us in on how you are doing.  I have missed having you around!  I'll check back soon and hope to hear from you!