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Hello again.... old-timer back for more!

Hi everyone. Returning after a long absence- diagnosed in 2002, treated in 2003 with good response, but relapsed. MedHelp was a lifesaver for me with all the knowledge, wisdom, humor, experience and sympathy. So, been lurking for a few years- checking on new treatments and how well they'd work for us type 1s, when my doc called and told me about a new trial I might be able to participate in: BI 201335 plus peg INF and riba. Already a Stage 3 trial, being fast tracked by the FDA; and they pay for everything!! Couldn't pass it up- my meager insurance won't even cover a single brand name medicine.

Good news was the biopsy showed no progression of liver damage (PHEW!). Fast forward to week 4. The sides have been awful- much worse than before (of course I'm 8 years older, almost 60). The morning nausea is horrible, the hemoglobin has been dropping- now heart pounds after one flight of stairs! The weepies started today (crying while listening to a cello solo- OMG!). I'm sure it'll get more amusing...

My main questions are; how many others are on the BI 201335 trial?  How are you doing? There doesn't seem to be much Boehringer Ingelheim related chat here- is there another site that's got more info on this trial? I would love to hear about meal and diet choices that might improve the nausea, and get more info about the fat consumption and types of foods to avoid. Will things get easier after a few more weeks? Will the red blood cells drop continue or level out? (I would really hate to go back on epo again- i hated that stuff....).

Anyway, enough for now- I just wanted to say Hi..... and thanks!

newb

3 Responses
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1765684 tn?1333819168
I'm in that trial, too.  Started in August.

I haven't been told to eat fat with my meds.  Morning stomach pain and nausea, the nausea is getting better.  I asked if I was okay to take Gravol and it was fine.  Maybe ask if you can take anything for the nausea?

I was DET <25 at week 12 and UND at week 18.  Too bad they don't do VL at any point in between, I don't know when I was UND.

My hemoglobin has hovered from 10 to 11.  I was told that if it dropped, reduction of ribavirin is what they would do.  Have you asked about 'rescue' drugs in this trial?

The drug looks promising, if you're getting it...  I'm pretty sure I'm in the 120 mg arm.   I find out how long I'll continue treating on Jan 20.

Good luck!

Sue
Helpful - 0
148588 tn?1465778809
http://www.news-medical.net/news/20111209/Enrollment-complete-in-Boehringer-Ingelheims-BI-201335-Phase-III-trial-for-HCV.aspx

Looks like Phase III includes 2,000 patients spread out over 15 countries in different parts of the world. So no telling how many might be reading this forum.
Interesting trial in that they got such got such good results in Phase II without IFN, but are going back to including Peg/riba in Phase III.
I also treated in 2003, but was fortunate enough to stay clear. Also was posting on a different forum at that time. Welcome back.
Helpful - 0
1945316 tn?1329748225
Sounds familar newb...first did treatment with Interferon/Rib in 2000 for 11 months.
Virus undetectable throughout...returned three months later.
Watched diet and stayed current on new treatments, jumped through some hoops to get started on Incivek.
Began treatment on Sept 2nd 2011, end date in Feb 13, 2012, (24 weeks).
Incivek will be standard treatment, patients who relapsed now have new hope.
Incivek is amazing, virus undetectable in 30 days, has remained so throughout, developed rash, (mild).
Helpful - 0
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