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Medical Forum / Diseases and Disorders / Hepatitis / May 2005Treatment Options and Questions
Greetings everyone, Here's a quick run down on my story: HepC 2a/2b, Stage 3 liver damage, Did Ribivirin(800mg/day) and 0.5ml Interferon for six months. Standard tx for my genotype. The first two months I was only doing half the daily dosage of ribiviran. Realized my error and started the correct dosage. My NP advised I go an extra 2 months and did. At 12 weeks I was undetectable. (Ye haaaaaaaaaaaaa!!!!!) 4 weeks after treatment I relapsed. :( I have to see my doctor tomorrow and just got off the phone with my new NP. She said that relapsers may be able to do the daily Infergen shots. That doesn't sound very good. Anyone have experience with the daily Infergen? I'm thinking that if I try the standard treatment again that it might work. My initial treatment was not standard. I botched it. What do you think? I'm interested in your opinions. Thanks, -Puckertoe O geez. I've got nothing intelligent to say...I'm too new to offer an informed opinion, but I wanted to say good luck, and let us know what happens. David > Greetings everyone, > [quoted text clipped - 27 lines] > > -Puckertoe I tried Infergen. It was horrible--I was not only sick, my brain was out on Planet Zork. It might have worked but I was just too sick to continue. Other than that, I have no advice except to follow your doctor's advice. Infergen might be the way to go for you, and you might tolerate it much better than I did. I'm no expert (which is why I usually tell everyone to jump in and correct me), but I do believe my doctor told me the HCV virus mutates almost constantly, and when one treatment doesn't work, chances are good the virus has mutated and built up a resistance to the treatment. Peg-Intron didn't work for me--the 12-week checkup was so blah he told me not to continue--and Pegasys didn't even touch the virus. > Greetings everyone, > [quoted text clipped - 27 lines] > > -Puckertoe Thanks for the heads up Thip. I can only hope that I'll fair better on the Infergen. I can imagine the Planet Zork thing. I'm still a little foggy from my previous tx. I'm sorry things aren;t working too well for us. Maybe we'll see better tx in the future. Here's to hoping anyway. > I tried Infergen. It was horrible--I was not only sick, my brain was out on > Planet Zork. It might have worked but I was just too sick to continue. [quoted text clipped - 40 lines] > > > > -Puckertoe Go for the daily Infergen until you can't stand it anymore, then do Pegasys til you get thru 11 months. You weren't taking enough ribavirin. If your weight allows it, do 1200 mg of the stuff every day. You asked...... Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum >Greetings everyone, > [quoted text clipped - 25 lines] > >-Puckertoe Sorry to see that tx let you down this time around. Take solace that you proved you can kick viral a.s and stay on tx, and that your liver had an eight-month "holiday" of sorts and surely is the better for it. I also have to believe it is a good sign that you were a solid responder even with the 400mg, half-dosing of Riba. One may reasonably believe the additional 2 months would have put you at parity with genotype 2 SVR statistics, but you have to wonder if the co-subtype infection acted against the 6-month tx standard for genotype 2. May I ask what your weight was at start of therapy? And which weeks you had "undetectable" RNA PCR results? While the resident Infergen guru is gathering his thoughts, I offer mine - which will likely be a bit different than his - and his have the advantage of being from experience, so I'd listen to his ;-) Of the most likely options, daily Infergen has to be the toughest row to hoe, but if you could handle the sides, perhaps most likely to end successfully. I'd also want the doctors to consider doing at least *12 full months* of full-dose weight-based Peg-IFN & Riba - and maybe upping the Riba to something closer to 1200mg to 1400mg/daily, depending on weight, and see how well you tolerate it - making sure in advance that your doc will attempt to mitigate sides before resorting to dosage reductions. And test like crazy all the way. Good wishes, either way. /greyhackles Re: Treatment Options and Questions Group: alt.support.hepatitis-c Date: Wed, May 25, 2005, 11:46pm (CDT+1) From: greyhackles@NOSPAMyahoo.com (greyhackles) On Wed, 25 May 2005 12:44:44 -0700, "Puckertoe" <dontspame@gome.com> wrote: Greetings everyone, Here's a quick run down on my story: HepC 2a/2b, Stage 3 liver damage, Did Ribivirin(800mg/day) and 0.5ml Interferon for six months. Standard tx for my genotype. The first two months I was only doing half the daily dosage of ribiviran. Realized my error and started the correct dosage. My NP advised I go an extra 2 months and did. At 12 weeks I was undetectable. (Ye haaaaaaaaaaaaa!!!!!) 4 weeks after treatment I relapsed. :( I have to see my doctor tomorrow and just got off the phone with my new NP. She said that relapsers may be able to do the daily Infergen shots. That doesn't sound very good. Anyone have experience with the daily Infergen? I'm thinking that if I try the standard treatment again that it might work. My initial treatment was not standard. I botched it. What do you think? I'm interested in your opinions. Thanks, -Puckertoe Sorry to see that tx let you down this time around. Take solace that you proved you can kick viral a.s and stay on tx, and that your liver had an eight-month "holiday" of sorts and surely is the better for it. I also have to believe it is a good sign that you were a solid responder even with the 400mg, half-dosing of Riba. One may reasonably believe the additional 2 months would have put you at parity with genotype 2 SVR statistics, but you have to wonder if the co-subtype infection acted against the 6-month tx standard for genotype 2. May I ask what your weight was at start of therapy? And which weeks you had "undetectable" RNA PCR results? While the resident Infergen guru is gathering his thoughts, I offer mine - which will likely be a bit different than his - and his have the advantage of being from experience, so I'd listen to his ;-) Of the most likely options, daily Infergen has to be the toughest row to hoe, but if you could handle the sides, perhaps most likely to end successfully. I'd also want the doctors to consider doing at least *12 full months* of full-dose weight-based Peg-IFN & Riba - and maybe upping the Riba to something closer to 1200mg to 1400mg/daily, depending on weight, and see how well you tolerate it - making sure in advance that your doc will attempt to mitigate sides before resorting to dosage reductions. And test like crazy all the way. Good wishes, either way. /greyhackles //////////////// The BCLD and NP I was seeing participate in most major clinical trials for hepc. The NP told me that the results they obtained for extending tx duration beyond 11 months for type 1 in patients that were late responders (2 log drop or better) after 12 weeks made little or no diffference in %'s achieving SVR. Also, doubling the amount of peglyated interferon was of little benefit and resulted in more intense side effects. By and far, the most significant factor in achieving SVR is early response to tx (undetectable in less than 12 weeks). For me, daily Infergen, 1400 mg/day ribavirin and Amantadine did just that. The real kicker though, was when after a few weeks of the daily Infergen, I did weekly shots of Pegasys along with it for a couple of weeks, then just Pegasys after I couldn't handle it anymore. Nine weeks into that regimen found the virus undetectable and I remain so to this day (more than a year later). Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum > just Pegasys after I couldn't handle it anymore. Nine weeks into that > regimen found the virus undetectable and I remain so to this day (more > than a year later). > Elmo Elmo, I didn't know it was over a year. Gee that's great! Doug Re: Treatment Options and Questions Group: alt.support.hepatitis-c Date: Thu, May 26, 2005, 11:17am (CDT+1) From: dt12@adelphia.net (Doug) just Pegasys after I couldn't handle it anymore. Nine weeks into that regimen found the virus undetectable and I remain so to this day (more than a year later). Elmo Elmo, I didn't know it was over a year. Gee that's great! Doug ////////// I did my last shot of interferon in March, 2004. :-) Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum >The BCLD and NP I was seeing participate in most major clinical trials >for hepc. The NP told me that the results they obtained for extending [quoted text clipped - 11 lines] >than a year later). >Elmo Puckertoe has 2a/2b coinfection, not type 1. And he was undetectable at 12 weeks - a solid EVR. Clearly, there's more to SVR than just "undetectable" labs during tx. As Thomas has pointed out, VL tests detect virus in the blood, but that's not where the viral production occurs, so you can be "undetectable" but still have a reservoir of virus producing cells that haven't been stamped out yet. Elmo, I can't remember the details of your first two trips on therapy - but it sounds like you needed the Infergen on the third to achieve solid EVR, but then you used conventional combo for the long term. Puckertoe didn't have a problem getting the EVR... Cheers /greyhackles Re: Treatment Options and Questions Group: alt.support.hepatitis-c Date: Thu, May 26, 2005, 8:43pm (CDT+1) From: greyhackles@NOSPAMyahoo.com (greyhackles) The BCLD and NP I was seeing participate in most major clinical trials for hepc. The NP told me that the results they obtained for extending tx duration beyond 11 months for type 1 in patients that were late responders (2 log drop or better) after 12 weeks made little or no diffference in %'s achieving SVR. Also, doubling the amount of peglyated interferon was of little benefit and resulted in more intense side effects. By and far, the most significant factor in achieving SVR is early response to tx (undetectable in less than 12 weeks). For me, daily Infergen, 1400 mg/day ribavirin and Amantadine did just that. The real kicker though, was when after a few weeks of the daily Infergen, I did weekly shots of Pegasys along with it for a couple of weeks, then just Pegasys after I couldn't handle it anymore. Nine weeks into that regimen found the virus undetectable and I remain so to this day (more than a year later). Elmo Puckertoe has 2a/2b coinfection, not type 1. And he was undetectable at 12 weeks - a solid EVR. Clearly, there's more to SVR than just "undetectable" labs during tx. As Thomas has pointed out, VL tests detect virus in the blood, but that's not where the viral production occurs, so you can be "undetectable" but still have a reservoir of virus producing cells that haven't been stamped out yet. Elmo, I can't remember the details of your first two trips on therapy - but it sounds like you needed the Infergen on the third to achieve solid EVR, but then you used conventional combo for the long term. Puckertoe didn't have a problem getting the EVR... Cheers /greyhackles ///////////// But he relapsed anyway. He's already done the standard Peg combo tx. His options are to do the same combination of drugs again (bad choice) or do something different. Other than take alot more riba, it seems to me the only other alternative he's got is to try Infergen along with a bunch of riba. Maybe even do some Amantadine at the same time. :-) Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum <SNIP> ,but then you used conventional combo for the long term. Puckertoe didn't have a problem getting the EVR... Cheers /greyhackles ///////////// No, I didn't exactly do the standard tx for the long term. I took more riba than the weight based plan called for......I took 1400 mg/day of riba until the last couple of months, my weight was 190 lbs. I also took Amantadine (another anti-viral drug), avoided all stress, laughted alot, ate copious amounts of ice cream, enjoyed music, and each day I prayed for everyone who is sick and suffering. Some or all of the above got me over the top. :-) Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Themthar's good fightin words...... (I like the attitude) Doug > <SNIP> > ,but then you used conventional combo for the long term. [quoted text clipped - 14 lines] > > http://community.webtv.net/elmoemerson/TheFamilyAlbum > <SNIP> > ,but then you used conventional combo for the long term. [quoted text clipped - 10 lines] >got me over the top. :-) >Elmo Yes, very good. It *is* clear that Riba dosage has a significant impact on SVR rates (someone posted a study link recently that basically showed that if one could stand the sides, doubling the current weight-based Riba dose would offer a huge increase in percent of cohort achieving SVR. That is why I asked about his weight, and offered that a full year/full dose course with the Riba upped to 1200-1400 depending on weight would be one alternative option to going nuclear ;-) but with a lower chance of SVR. No doubt, if one is going into a second or third round of therapy, and is really cranked up to hit a home run, Infergen is likely the way to go. As for the attitude adjustment: I'm 100% with you on that, and it has meant a sea change for me. It's liberating, ain't it? :-) Cheers /greyhackles Re: Treatment Options and Questions Group: alt.support.hepatitis-c Date: Fri, May 27, 2005, 8:57pm (CDT+1) From: greyhackles@NOSPAMyahoo.com (greyhackles) <SNIP> ,but then you used conventional combo for the long term. Puckertoe didn't have a problem getting the EVR... Cheers /greyhackles ///////////// No, I didn't exactly do the standard tx for the long term. I took more riba than the weight based plan called for......I took 1400 mg/day of riba until the last couple of months, my weight was 190 lbs. I also took Amantadine (another anti-viral drug), avoided all stress, laughted alot, ate copious amounts of ice cream, enjoyed music, and each day I prayed for everyone who is sick and suffering. Some or all of the above got me over the top. :-) Elmo Yes, very good. It *is* clear that Riba dosage has a significant impact on SVR rates (someone posted a study link recently that basically showed that if one could stand the sides, doubling the current weight-based Riba dose would offer a huge increase in percent of cohort achieving SVR. That is why I asked about his weight, and offered that a full year/full dose course with the Riba upped to 1200-1400 depending on weight would be one alternative option to going nuclear ;-) but with a lower chance of SVR. No doubt, if one is going into a second or third round of therapy, and is really cranked up to hit a home run, Infergen is likely the way to go. As for the attitude adjustment: I'm 100% with you on that, and it has meant a sea change for me. It's liberating, ain't it? :-) Cheers /greyhackles //////// Which part of the attitiude adjustment are you referring to? ahahahaha Why wait til the third inning to hit a home run? I wasted two years of struggle, finanacial disaster and lots of pain and suffering to get to that point. If I knew way back when what I know now, I'd have brought out the big guns to begin with and avoided the misery. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum At the start of my tx my weight was about 200lbs. About 30lbs over weight actually. (I'm 71") I'm 180lbs now and seem to maintain that level. At 12 weeks was the first blood test to see if I was undetectable and I was. I believe that's why the NP decided to go an extra two months since it was working. I agree that my liver had a much needed rest. I'm paying very close attention to what I eat now. Red meat once a week. Fish three times a week. Lots of fiber, as little saturated fat as possible, and low sodium. Yes Elmo, I did ask. And I appreciate your frankness and honesty. Pussy footing around is not going to get me through this. As a matter of fact I'm depending on your experience - and that of the group- to help me through this. If I can wait six months and build my strength and stanima, I'm sure that'll help in the fight. All I have to do is win once. I'll let you know what the doc says today. > >Greetings everyone, > > [quoted text clipped - 55 lines] > > /greyhackles I'm 200lbs and on 1200mg/day...does that make sense? (Not that my doc's about to change it.) D > At the start of my tx my weight was about 200lbs. About 30lbs over weight > actually. (I'm 71") I'm 180lbs now and seem to maintain that level. [quoted text clipped - 101 lines] >> >> /greyhackles >I'm 200lbs and on 1200mg/day...does that make sense? (Not that my doc's >about to change it.) Yep, that sounds right for the current standard... |
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