Anyone know any African Americans who have been successfully treated?

[Henry4]

I am an African American male and I tried treatment with Peg/Ribaviron two times.  Neither was succesful.  I know that African Americans are poor responders.  But how poor I can't figure out.  Does anyone here actually know of an African American who has svr?
Henry

[scruffy]

Hey Henry, I don't know the answer but what genotype are you and how long did you treat for? That can have a big effect on outcome as not all doctors are too swift at their jobs. I'm a 1a and treated 48 weeks with peg-intron and 1200mg ribavirin and relapsed.Hopefully someone will have useful info for you.Good luck, frank

[jmjm530]

This study suggest you have only a 7% chance of success but it doesn't break it down by genotype. That can make a difference:
http://tinyurl.com/7nal5

Do you know your genotype and stage of liver damage?

Given your significantly lower odds of clearing the virus,
I'd wait for newer treatments if your're a stage 0,1 or even 2.

If you're a stage 3 or 4, I'd start doing some research into more agressive treatments like Infergen and perhaps look into some trials.

[scruffy]

I'm  not African-American Henry. More like Minnesota-white.

[Califia]

Sorry to hear about all this hard work for no results--yet, that is.  But hang in there.  The following study of consensus interferon might offer some real encouragement:

<a href=http://www.projectsinknowledge.com/Init/G/1710/index.cfm#intro><b>Leevy et al: African American nonresponders re-treated with CIFN and ribavirin</b></a>

Carroll M. Leevy, MD, reported findings from a single-center, open-label trial of interferon alfacon-1 (consensus interferon or CIFN) plus ribavirin in peginterferon/ribavirin nonresponders.  Consensus interferon is a genetically engineered molecule that has demonstrated greater biologic potency compared with the naturally occurring interferon alfas, such as interferon alfa-2a or alfa-2b.

The 137 patients enrolled in the study were separated into treatment groups according to race: African American, n = 45; Caucasian, n = 92. The groups were matched for genotype, viral load at baseline, viral load after peginterferon alfa-2b/ribavirin therapy but before consensus interferon, age, and gender. All patients failed to achieve early virologic response (EVR) after 12 weeks with peginterferon alfa-2b 1.5 µg/kg QW plus ribavirin 1000 to 1200 mg/d and were started immediately, with no washout period, on consensus interferon 15 µg/d plus ribavirin 1000 to 1200 mg/d for 12 weeks, with the frequency of consensus interferon reduced to thrice weekly for an additional 36 weeks.

At weeks 12, 24, and 48, African-American patients achieved a lesser virologic response compared with Caucasians (Figure 3).9 This lesser response continued through to the end of the 24-week follow-up period, at which time 27% of African Americans had achieved SVR compared with 41% of Caucasians (P = .09), a difference that was statistically insignificant. The only time period with a statistically significant difference between the response of African Americans and Caucasians was at week 12, when 13% of African Americans were HCV RNA negative compared with 28% of Caucasians (P = .04).

Therapy was well tolerated. Hematologic adverse events were treated with growth factors according to study protocol. Sixteen percent of patients required granulocyte colony-stimulating factor due to absolute neutrophil count <750 cells/mL. Fifteen percent of patients required either dose reduction or a drug holiday during the treatment period, but all patients completed the trial. Adherent patients were preselected by enrolling only patients with 80/80/80 adherence during the 12 weeks of peginterferon/ribavirin therapy.

These study findings demonstrate that African Americans who failed to achieve EVR on previous peginterferon/ribavirin therapy had a clinically significant rate of response following therapy with CIFN/ribavirin. Although African Americans had a trend toward lesser virologic response compared with Caucasians, this difference was statistically insignificant after week 12. A randomized, controlled trial of consensus interferon plus ribavirin in a larger sample of African Americans is now warranted.
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[Bill1954]

This link provides a list of 30 -40 studies related to the epidemiology of African-Americans and HCV.

http://tinyurl.com/dxzzh

Quite a bit of info here; hopefuly enough to help you arive at some conclusions....Best of luck to you,

Bill
-------------------------------
Jmjm; Cool tiny link!

[Henry4]

Thank you all for your input.  I am geno 1 in stage 3.  But I haven't been checked since before my two treatments so I may be in stage 4.  Someone at this site said he was stage 3 before treatment and in stage 4 after it was over.  That scared me.  I'm thinking about the nm283 trials.  Maybe CIFN?  Right now I'm looking for a good doctor in Chicago.  I fired my last one because now I see that he should not have told me to go on two rounds of peg/ribaviron.  
Henry

[2irish]

have you tried University of Chicago Hospital?  They have onr of the best doctor in hepatology...let me know if you need the name.

[Bill1954]

The only NM-283 trial info I could find was for treatment-naive patients. Here's the address -

http://tinyurl.com/7jahd

Good luck with the doctor search in Chicago; it sounds like CIFN might be a good one to pursue.

Bill

[Lulu2005]

Dr. Leevy, being an African American himself, has done a lot of work in this area. Even though AA's do not respond quite as well as Caucasians, they also do not progress to cirrhosis as often as whites.

[1fairygirl]

Hey scruffy,
You said that you are "Minnesota white," are you from MN or have you just been here and seen us and your blood counts are down?
Smiles, Sue from central MN

[Henry4]

Hi,
Who is Dr. Leevy?
Henry

[Henry4]

Hi,
What is the name of the doctor at University of Chicago Hospital?
Thanks, Henry

[scruffy]

Hi Sue, I'm in Elk River,Mn and my color has returned cause I'm in between treatments but I was quite pale for a while there.smile. frank

[Lulu2005]

Dr. Leevy is a hepatologist from Rutgers Medical School.

[1fairygirl]

Frank,
We bought our bike at Zylstra's in your fair city!
You have probably the best Harley dealership in the state.
Smiles, Sue

[scruffy]

Cool! I drive by there everyday.There is a mn hepfest coming up in Brooklyn Center I think Aug4-7? You know about it? I've got info if you want it. frank

[1fairygirl]

Frank,
I would love to get the info on that.  I'm pretty weak right now but as we all know, that can change any day, too. : )  I think dr. may rx procrit.  Could you either put info here or e-mail it to me at ***@****  That would be great!  
Many thanks and Smiles, Sue

[scruffy]

Write for info to ***@**** and I can be reached at ***@**** if needed.(it might be fun and interesting-never been to a hepfest)frank

[scruffy]

Brooklyn Park not Brooklyn Center-I always screw that up! frank

[1fairygirl]

Hey, thanks, Frank!
I checked that out and it sounds like fun!!
Hope to be able to make it.  I'm in Wadena so it's a bit of a jaunt but if I'm  doing better, I'd like to be there!
I get those two mixed up, too.  
Smiles, Sue

[2irish]

DR. don JENSEN .  He was at Rush Presbyterian for over 20 yrs.  Has just moved to University Chicago Hosp.  Really good & up to date, heads a lot of studies.  Please call him

[kirksfam]

Dr. Carroll M. Leevy is not at Rutgers. He and his son, Dr. Carroll B. Leevy (a leading hepatologist in his own right), are both at the New Jersey Medical School (UMDNJ).

kirksfam

[Mocha2005]

I have just been been told that I am a non responder.  I have Hep C, type1.  I had been on treatment for 13 weeks and it was not successful for me.  I am feeling pretty down right now about it. I am African American and I do not really know what to feel this time.  I have been feeling  felt like I have been ill with the flu.  I have not been on my zoloft either for about a week.  I am feeling sad.  I hope someone can give  me some type of encouragment to keep me and all non responders pressin on.  Where do non responders go now?  HELP! HELP!!!!!

[scruffy]

I'll bet some other wacko checks down here once in a while. smile.

[scruffy]

Mocha, if you see this-you need to post up where someone will see it-I think this got overlooked. I hope you are well and still coming here. frank

[Mocha2005]

Frank, thanks for answering. I am really new to the boards.  I really do not know how they work yet, I am still in training.  I am feeling better and feeling like a will continue on.  I am going to be trying alternative medicine soon.  How are you doing Frank?

[Mocha2005]

Scuffy, the message up above is for you.  Sorry I accidentally put Frank.  Frank, How are you doing?

[cuteus]

like scruffy said, post above for some useful input by members. When you say you are a non responder, does that mean your viral load did not decrease at all? or is going too slow for the drs wishes?

[scruffy]

Hey Mocha! Glad you're still around. You can call me frank or scruffy or anything for that matter. Also, you can slip your questions into any of the posts up top or post a new one up top. Don't worry about making mistakes we have plenty of people who will tell you if you do! No sweat. Most of the people who come here are fairly new to the whole forum thing. I am well. I am a type 1a and treated with peg-intron/rebetol for 48 weeks. I tested clear athe end of tx(treatmeent) and relapsed shortly after stopping. I'm going in for a biopsy sept 8 and will determine what to do next.Post your questions about being a non-responder close to the current thread or start a new one and you will certainly get a response. Some of these people are quite knowledgeable. Take care, frank

Cutie-you little rascal! I knew some other wacko(with affection) would show up down here. Why we do who knows. See you. frank

[cuteus]

it's the bottom feeders syndrome! not exclusive to you, dear.;-]

[scruffy]

Lin, glad to hear that your life is great. There certainly is no shortage of new folks here. I miss you also. Treat yourself kindly. I hope you find all you seek in life. frank

[Tallblonde]

Just one of the wackos checking in.... ;)

Have a great holiday weekend everybody!  Considering all the misery in New Orleans and Biloxi, we all have much to be grateful for.

Susan

[scruffy]

Thank God for the wackos or t'would be lonely. You be well Tall Susan. frank

[LvdByGod]

HI BOTTOM FEEDERS! YOU KNOW I HAD TO CHECK IN HERE!
I LIKE SNEEKING AROUND TO THE HIDDEN PLACES ON THIS SITE.
hey chev, hey frank!

;O) LOL

sandi

[scruffy]

Sandi!!!!!!! I get worried about you. I guess I should just get used to your irregular appearances huh? Glad you're ok and at least dropping by one of the 2 bottoms.(that sounds not quite right does'nt it?)LOL      frank

[cuteus]

AHAH!
I recognized EVERYONE!
you.....bottom feeders!

habits die hard,  anyone seen my plankton?

[friole]

mashed taters, boiled taters, sweet taters, french fried taters, baked taters  Yes siree -- love those taters

[LvdByGod]

love you guys! :O)

frankdarlin, you're soooo sweet to be concerned. sometimes i just take a couple weeks off when things get crazy. i seem to get too much going on for my own britches, so don't get too concerned. i guess i'm kinda a stinker like that...but it's nice to know i'm cared about. thanks soooo much... tear tear...

you guys i hope you always know you are cared about and prayed for by me... always...even when i'm not online of course... i never stop thinking and caring about you all! i consider you my very dear friends and i'm sure we will always remain friends even after we all clear. i'm even talkin with bob about going to D.C. next year in hopes of meeting you guys...

(((CHEV))) i'm also trying to post some pics at msn FINALLY.
perhaps you WILL get to see your kitties after all...finally!

((("Honeypunkin and Dreamer"))) i have the cutest pictures of them having a play fight. they really are best buds! there all still so cute and complete characters...

i can't wait to show you. I have them in my computer now so if i don't get them to msn i will for sure email you copies. if that's ok that is.

hey where is Honey at these days has she been poping in at all?

[LvdByGod]

chev, do they live in the hurricane area? oh my gosh, i pray they're ok.

[scruffy]

Very good news indeed.

[LvdByGod]

yes thanks for the update chev...thats a relief to hear about them...i pray for the others...