That is my question also. THANK YOU GUYS. You all are so helpfull. I have not heard of this tx and was very concerned about the sx. I've done the intron/riba and the peg/riba and relapsed on both tx. So now i have been talking to the doc and she belives that one more will "not hurt", matter of speaking. just what is this vertex stuff? I have not heard of any trials on this yet.
Thank you
( A WINNER never Quits And QUITER never Wins.)
Yes fly I am currently on daily dose infergen. Riba. wk 26 of 48. feel like hell. Dr says this is best chance for relapsers. Its tough. I wont lie 2 ya. Chin up, chest out and do it. Remember the old quote: if yer goin thru hell, just keep goin. good luck.
triggertime
Keepda Faith & don4get 2 giggle
I failed mono and Peg/Riba. 15 mcg daily with 1000 mg Riba was the cure we were hoping for in January of last year, but by week 9 I had developed retinal bleeding and cotton wool spots, though I think this is rather common and resolves once treatment is stopped. I never had any eye symtoms, and the eye problems went away immediately once I stopped treatment. I also had untreated high blood pressure on Infergen, which could have contributed to the eye problems.
I had a harder time on Infergen with shortness of breath and severe fatigue, but much less nausea than with Peg. I liked Infergen and was angry at being taken off of it. I dropped from a VL of 3 million something to 794,000 in four weeks, but this was deemed a non-response. I was taken off of it at week 9 last year due to the eye problems, not the non-response. I have heard it works very well for some non-responders. I hope it works for you.
I did 6 months of Infergen/Riba. First 3 months of 15 mcg 3X weekly, however, when I didn't have the 2 log drop at 12 weeks I went to daily shots for another 12 weeks. I found it to be much more tolerable than the Peg tx I had done prior to. Fatigue set in a lot sooner, but I was still able to work. Although Infergen didn't work for me, if I had it to do all over again, I wouldn't hesitate to give it a try.
I just finished doing the long course - 72 weeks combo treatment.
I wonder if it's possible in this world to figure out a way to do Vertex WITH Infergen...I mean I know it's not approved or even being studied but - for those of us with hard times (I am a 1A/1B who got stuck with some stubborn like me strain) it sounds like a double whammy! :)
If I do not get and keep SVR after 72 weeks...I will look into either trying Vertex to get me to UND quickly and hopefully eradicate the virus OR Infergen.
I had looked at Infergen early in my learning about HCV and while it does sound harder than combo treatment it can have excellent results for people with the hard to kill strains.
What stage are you? I'm a stage 3 (I am hoping that treating for 72 weeks, being UND for probably about 60 weeks) has regressed my liver damage a LOT but if not after this brief respite from treatment...I'll be starting again myself.
This path sucks plain and simple - but it sounds to me like you are just as tough (I never knew before I was I always thought I was a big cry baby!) stubborn person and we WILL get rid of this stupid disease one way or the other.
Believe it and go for it!
My BEST to you.
PS I wish there was a yay or nay way to tell ya but - nobody knows what your body will do as you know. That is the damn hardest part of it all. We need a GUARANTEE and I hope they come up with one soon.
Debby
I'm doin it right now. Daily injections of 15 Mcg and 1200 mg Ribavirin. Ribavirin dosage is weight based.
Split the dose.
I went from 2,400,000 down to 58. It's time for another lab. My dr said I need 24-48 weeks after und.
Infergen will get you there pretty quick.
I did Peg but it didn't work. The peg/riba combo was a cake walk for me. Infergen and I don't get along real well. I'm glad to have it but there were a few more sides. Fatigue, a little pain in my bones, dehydrated.
You can handle it.
Each person is different as far as sides.
How much liver damage do you have? Extending treatment with Infergen is pretty heavy duty and some might argue best only for those with significant liver damage. Also, have you discussed with your doctor the Vertex trials? They are now being opened to previous non-responders. Lastly, for those that don't remember, "Fly" is the one who has run 2 (or is that 3) marathons while treating! Of course, it could have nothing to do with your viral response, but some have commented that this extreme type of exercise could tax your immune system and possibly have an effect on treatment. If it were me, at this point I'd make treatment my priority and do all I could to maximize my chances off success, including taking more ribavirin if necessary. Some exercise is good during treatment, but running marathons may be counter productive. You once said, you really didn't care and you'd be happy to die trying, or something like that. Sounded a little extreme to me.
All the best,
-- Jim
My husband did infergen as part of the Intermune study. He did a daily shot with the riba. He will have to get online and give you more info. It was very tough for him, he did do it for about a year..48 weeks I think. He had done the pegysus combo previously, and is now on a maintenance dose of 1/2 a shot (no riba)weekly. Good luck, hang in there!
I have done infergen as a last result. It was tougher for me than peg-intron, pegasys. It is used with Riba. I started with 3 shots per wk., then upped to every day for 52 wks. I cleared for 6 straight mths., and relapsed 1 mth. after stopping in Aug. This doesn't mean that this will happen to you or others. If I can be of any further help, just let me know.
Sandy