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