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.
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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
Good points. I agree the emotional does enter into the tx decision but in my case this was further compounded when my treating hepatologist came up with a different conclusion from my two consults thereby putting me into an intellecutal conflict as ell.
As far as advising people, I think the best way is to lay out as much information (studes, anecdotal, personal opinion) as possible so folks can make their own decisions. But always be clear what is based on a study, what is based on anecdotal, and what simply is your opinion.
Therefore, when I say I'm going to treat for 60-weeks, I'm always careful to point out that the 60-week recommendation was made by my treating hepatologist (because of age and histology) while two equally qualified consults looking at the same data only recommended 48 weeks.
My *opinion* is that this may have something to do with the fact that the other two hepatologists treat with Peg Intron and not Pegasys, but I have no facts to back this up and freely state this. It may also simply be that there is too little data accessible on geno 1b's who are over 50 with stage 3 and with RVR's.
My *decision* to treat for 60 weeks is based mostly on the suggestion of my treating doctor, but partly I'm sure about the emotional insecurity that you talk about. But one thing is sure, at some point, all of us have to take our last shot and let things fall where they may. Good topic.
-- Jim
As far as advising people, I think the best way is to lay out as much information (studes, anecdotal, personal opinion) as possible so folks can make their own decisions. But always be clear what is based on a study, what is based on anecdotal, and what simply is your opinion.
Therefore, when I say I'm going to treat for 60-weeks, I'm always careful to point out that the 60-week recommendation was made by my treating hepatologist (because of age and histology) while two equally qualified consults looking at the same data only recommended 48 weeks.
My *opinion* is that this may have something to do with the fact that the other two hepatologists treat with Peg Intron and not Pegasys, but I have no facts to back this up and freely state this. It may also simply be that there is too little data accessible on geno 1b's who are over 50 with stage 3 and with RVR's.
My *decision* to treat for 60 weeks is based mostly on the suggestion of my treating doctor, but partly I'm sure about the emotional insecurity that you talk about. But one thing is sure, at some point, all of us have to take our last shot and let things fall where they may. Good topic.
-- Jim
Oh no, I am thrilled to be at this spot, but I am not taking any of this for granted, know it could be another story any time. I treated now because it was good time in my life to do it. Good insurance, flexible schedule if I needed it, Well, um, there is that not getting any younger thing. I probably got this in early 80's (well pretty sure, diagnosed NonA/NonB, they thought it was my BC pills. I wanted best chance of SVR, and I would have stressed more had I waited five or whatever years for the new drug. My personality type is the let's get the bad over so we don't have to worry and they we have can fun and just not worry about it anymore!
You guys are both in the homestretch now, Jim 6-8?, Goof 2-3? Some prior discussions were around the theory of building the riba levels early in tx with the concept of lowering toward the end of tx. Goof is a lttle closer than Jim. Goof just reduced, sounds like grudgingly (a little riba jonesing perhaps)and Jim a few weeks later. With the riba-induced problems you guys have had do you plan to reduce further, or reduce at all? I think I know the answer but I wanted to throw it out there for others who are considering or may be in a similar position. And, when you do finish do you have any specific tactics for flushing that stuff out? (ie ACV, herbs, Drano, power flush with coffee)
hey i'm 'sucking up' 6 ribas a day,and it's workin..(knock on wood) but that don't mean i gotta like the ****!.....if need be,if warranted i will take more for a longer period-like yu,i'm doin a personal countdown:34 to go!.....i remember readin posts about those lookin forward to peg-shot....my best day use to be just before shot,now it seems my body craves the stuff-very worrisome? is vrus rallyin in the trough? i am still waiting on my 12 week vl test..somebody goofed& i got tested for HIV...lucky they still had enuff blood drawn from week 12 to do over.......aww heck,i gotta be responding,but this suspense adds nothing to my quality of life-just more time to reflect on my path to CLEARANCE!!!!!!!!!-we definately live in interesting times,Cheers
Hey all - YES! I did get sleep last night. Woke up once with a subdued itch and put some sarna(menthol-camphor OTC strength) an d then it was bsck to ZZZZZZZZ. Thank you. Bob the hyroxyzine they gave you is the Atarax pasoperson and cuteus also suggested. Alsthough mine are 10mg but maybe because I'm barely 140# now. Question though, mine says 1 every 6hrs. I'm a little hesitant about trying it during the day, especially if I go to work. Don't wanta be too tired or cross a wire someplace and put all of us in the tri state area in the dark. Well- that'd be a stretch but you know what I mean. Any of you use it during the day?
Beamer- HOW you doing? Happy seeing you up and posting. That happened to me last year,pre tx, they tested for HIV instead of a HCV PCR. All's I knew was it was it was 2 weeks waiting, then they told me I had to take test over, no comments when I asked why, then more waiting. My doc finally told me and of course just said the good news is I was neg for HIV.
Don
Beamer- HOW you doing? Happy seeing you up and posting. That happened to me last year,pre tx, they tested for HIV instead of a HCV PCR. All's I knew was it was it was 2 weeks waiting, then they told me I had to take test over, no comments when I asked why, then more waiting. My doc finally told me and of course just said the good news is I was neg for HIV.
Don
prettypoison -- nothing pretty about those cute little pink pills. How nice of you to buy a computer to join us!!!! Remarkable progress. Contgrates. Try some Nioxin for the hair - seems to have helped me. Welcome
goof -- can't believe they want to boost your hgb during the last 2 weeks or treatment. Sounds weird to me. Are you going to continue the PRocrit after tx until your system builds back up (I hope)
jarman -- that totally suxs on the PCR. At first I thought you were saying your vl went up 2x - but I think you were saying you stayed on teh double peg for 6 weeks - is that right? What after this PCR. Will you try the infergen if this is not working?
beam -- good to see you. Are you taking the PRocrit? How are the shots going and do you see any effect yet?
strator - I am glad you finally are getting some relief on the itching. Don't ever think any side is a minor side and not worthy of discussing. I am just glad the meds you found and the OTC stuff in helping.
goof -- can't believe they want to boost your hgb during the last 2 weeks or treatment. Sounds weird to me. Are you going to continue the PRocrit after tx until your system builds back up (I hope)
jarman -- that totally suxs on the PCR. At first I thought you were saying your vl went up 2x - but I think you were saying you stayed on teh double peg for 6 weeks - is that right? What after this PCR. Will you try the infergen if this is not working?
beam -- good to see you. Are you taking the PRocrit? How are the shots going and do you see any effect yet?
strator - I am glad you finally are getting some relief on the itching. Don't ever think any side is a minor side and not worthy of discussing. I am just glad the meds you found and the OTC stuff in helping.
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