Aa
why don't we hear from more trial people
I would like to hear the experience from people without cirrhosis and diffenent degrees of liver damage and how they did in trials with 24 and 48 weeks. We never hear from this group of people. It would be nice to know who reach SVR and who didn't without just reading trial information that is so limited as to the individual personal situation and end result. They are out there, how do you find them?
they lowered my riba to 800 about 2 weeks ago. it's much better for me. i have 3 doctors and the one i saw then couldn't believe i was on 1000 of riba. she said it was too much for me. i have a rash on my back and by my collarbones. at night i take 1/2 benadryl and smother with gold bond lotion. it works pretty good for me. i'm geno 1a with stage 2 fibrosis/ mild inflamation. i will be told at 24 weeks if i can stop or go for 24 more. whatever happens i want to slay this dragon. best wishes...belle
I thought that i would also mention that different things are blinded in trials.
Sometimes you don't know what arm you are in; lets say one arm is placebo or comparator and the other arms have the active new compounds...... but you won't know which arm you get.
Sometimes it could be about treatment issues such as the rash.
Vertex had a phase 3 trial in which you knew you were getting triple therapy, what you didn't know was if you were doing 12 & 12 or 12 & 36; duration.
Some of those trials were very frustrating; since they never told you anything some people in finished 12 & 12 and were finished; a success!!..... others in the trial were stopped (or in theory may have been stopped) due to inadequate response, which means they automatically would stop TX at 24 weeks; they were still detectable. Both the extreme successes and slow responder failures were not told and were stopped at the same time. There was no way to know unless the treatment was stopped due to medical reasons like anemia or rash, or if a person experienced viral breakthough.
Unless people did a private PCR they wouldn't know squat. The original guidelines were that trials were to be blinded until the SOC arms were all in; 48 +24 weeks. I think they may have softened that; way too hard core.
willy
Sometimes you don't know what arm you are in; lets say one arm is placebo or comparator and the other arms have the active new compounds...... but you won't know which arm you get.
Sometimes it could be about treatment issues such as the rash.
Vertex had a phase 3 trial in which you knew you were getting triple therapy, what you didn't know was if you were doing 12 & 12 or 12 & 36; duration.
Some of those trials were very frustrating; since they never told you anything some people in finished 12 & 12 and were finished; a success!!..... others in the trial were stopped (or in theory may have been stopped) due to inadequate response, which means they automatically would stop TX at 24 weeks; they were still detectable. Both the extreme successes and slow responder failures were not told and were stopped at the same time. There was no way to know unless the treatment was stopped due to medical reasons like anemia or rash, or if a person experienced viral breakthough.
Unless people did a private PCR they wouldn't know squat. The original guidelines were that trials were to be blinded until the SOC arms were all in; 48 +24 weeks. I think they may have softened that; way too hard core.
willy
I am not in a trial though. Forgot to mention that. I'm geno 1a with an ILB28 CC and cirrhotic.Waiting for more info before I decide if I'm going the 48 or the 24 weeks
Hi Bella, I'm going on week 14 incivek triple therapy. I did my 12 weeks of incivek. slept through most of it. The week I came off incivek was the week from hell for me, but with my GP gave me an anti anxiety drug until I got to my hep doc the next day. Thought I was going to die felt so bad. My hep Doc lowered my riba 200 mg. and now a week later I'm feeling great. Don't have my energy level back but no sides. Hoping I can keep the Riba at 800 mg. It works nicely for me. I'll find out in about 4 weeks when I get my next labs. From what I understand lowering it after the 12 week undetectable is safe to do. Hope you keep keep doing well. Isn't it nice when the sides let up?
hi there. i'm in the 16th week of a gilead double-blind study. i'm on peg/riba and gs-9451. i was on tegobuvir but it was stopped during week 10. i was und week 8. my sx have been minimal most days but i've had my share of bad days, also. i'll let you know my progress. belle
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