Aa
OPEN POST
Just wrote a big note to Friole, posted below under "I'm pretty upset" by ohgreat). Took a chance on an open "question" space. Here it is ... it's all yours.
______________________________________
Friole, here's what I said below ...
Hey, I am still hanging in there, for sure. I am a stubborn cuss and WILL beat this one way or the other. Initial VL was 1.3 million.
Won't get into long story, but at 24 weeks I was a non-responder to Inteferon. VL dropped to 49,000. Better than not at all, but not enough to continue w/Inteferon.
I am now on "consensus" Infergen, daily shots. Also still taking my 5 Ribavirin daily. I thought it would be terrible, but so far so good. It's only been a week, we will see what's coming. GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal. I got it and cannot even feel the injections. Y'all remember that if you have to go to daily.
My PCR will be done every 4 weeks for at least 12 weeks. Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.
Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter. I'm freezing without a hat! And the ever loving riba rash. Those are the two biggies right now. Oh, Procrit of course, and my best friend Paxil.
I'll try to keep you posted, feeling better now. You are rig
______________________________________
Friole, here's what I said below ...
Hey, I am still hanging in there, for sure. I am a stubborn cuss and WILL beat this one way or the other. Initial VL was 1.3 million.
Won't get into long story, but at 24 weeks I was a non-responder to Inteferon. VL dropped to 49,000. Better than not at all, but not enough to continue w/Inteferon.
I am now on "consensus" Infergen, daily shots. Also still taking my 5 Ribavirin daily. I thought it would be terrible, but so far so good. It's only been a week, we will see what's coming. GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal. I got it and cannot even feel the injections. Y'all remember that if you have to go to daily.
My PCR will be done every 4 weeks for at least 12 weeks. Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.
Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter. I'm freezing without a hat! And the ever loving riba rash. Those are the two biggies right now. Oh, Procrit of course, and my best friend Paxil.
I'll try to keep you posted, feeling better now. You are rig
<i><b>goofy: GO, GO, GO!! longer! come on!</i></b>
Gee. I've never heard *that* before....
<i>If longer tx does not do it, what does?</i>
Extra riba is my egg basket du jour.
They have data that says not clear at 4 wks and clear at 12 could benefit from extra tx, but dare I say it...... RVR is the trump card here.
Studies say that 12 or 16 weeks should have done the trick for me. I'm going 26, with extra riba for almost the whole ride. I can only hope that's enough.
You're not the first gal to tell me longer is better, but I've always held that it doesn't apply in my case.
Gee. I've never heard *that* before....
<i>If longer tx does not do it, what does?</i>
Extra riba is my egg basket du jour.
They have data that says not clear at 4 wks and clear at 12 could benefit from extra tx, but dare I say it...... RVR is the trump card here.
Studies say that 12 or 16 weeks should have done the trick for me. I'm going 26, with extra riba for almost the whole ride. I can only hope that's enough.
You're not the first gal to tell me longer is better, but I've always held that it doesn't apply in my case.
In this situation it would be great if there was a convienient and economical way (Fibroscan specifically) to evaluate post TX liver histology without invasive bx. If relapse or breakthrough, the improved liver condition, if any, from TX could help those to decide to go at it again right away or fight another day with new meds down the road. It will be a new HCV day if/when Fibroscan and the new drugs pan out and are available.
goofy: GO, GO, GO!! longer! come on!
I agree, with geno 3, there is not enough data to promote longer tx, but then, what the heck is at work with more relapses than geno 2? If longer tx does not do it, what does?
all tx:
when the end of tx approaches, it comes down to what do you fear most: the meds or a relapse? Relapse fear seems to be winning the race for now.
I agree, with geno 3, there is not enough data to promote longer tx, but then, what the heck is at work with more relapses than geno 2? If longer tx does not do it, what does?
all tx:
when the end of tx approaches, it comes down to what do you fear most: the meds or a relapse? Relapse fear seems to be winning the race for now.
Saw my Doc yesterday. He asks how I'm feeling coming ito the home stretch? Expecting reassurances, I explained I was getting the predictable cold feet so many of us experience.
His response? Well, I'll support you if you want to go an extra six mos.....
Ack!! Ohhhhh Noooooooooo Mr. Bill.....
We discussed how there's no data supporting a geno 3 RVR extending six mos. No telling whether odds are improved 10%, 3%, or 0%. Intellectually, it just don't add up.
BTW, I'm going 6 mos total, another 4 injections.
His response? Well, I'll support you if you want to go an extra six mos.....
Ack!! Ohhhhh Noooooooooo Mr. Bill.....
We discussed how there's no data supporting a geno 3 RVR extending six mos. No telling whether odds are improved 10%, 3%, or 0%. Intellectually, it just don't add up.
BTW, I'm going 6 mos total, another 4 injections.
Still have around ten or so weeks left with no final decisions until I speak with my doc again. My hgb has more or less stabalized in the 12's so I'm sticking to 1200mg/day
of Riba which has been my usual dose for almost all of treatment.
As far as "flushing" the riba out -- the only thing I'll probably want to do is flush any leftovers down the toilet. LOL. But seriously, riba has a long half life so I suppose the flushing process will take place in a gradual manner as soon as I stop.
-- Jim
of Riba which has been my usual dose for almost all of treatment.
As far as "flushing" the riba out -- the only thing I'll probably want to do is flush any leftovers down the toilet. LOL. But seriously, riba has a long half life so I suppose the flushing process will take place in a gradual manner as soon as I stop.
-- Jim
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