Medical Forum / Diseases and Disorders / Hepatitis / February 2007
Short Intro and Questions
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Guy - 12 Feb 2007 06:15 GMT Hi,
Just joined the group again after 5 years. It was a bit crazy back then. Lots of flames, rants and other unrelated BS. Seems to be a bit more on topic now.
I found out I have 1B about 5 years ago. Was always a heavy drinker. Was drinking and not eating as much as I should have and got sick as hell.
Anyhow, went for a checkup and ALT was @ 450. Slowly weened myself off of the booze and decided to take the alternative route. Bought Lloyd Wrights "TRIUMPH OVER HEPATITIS C" and took all his suggested supplements except Thymus, too damn expensive. Did that for about 2 years and started feeling better. Switched to Chinese supplements and did them for another 2 years. Actually managed to get viral load from 350K to 250K for whatever that's worth.
Then last June the Dragon started kicking my a.s, dizziness and other flu like symptoms. Started missing time off from work, symptoms started becoming more frequent, went to a new Dr and decided to go the Interferon/Ribavirin route. Had avoided it all this time because I am a genotype 1B and had read about all the bad side effects.
Was home sick from work Friday, had the Peg in the fridge took first dreaded shot. Actually felt better afterwards. The Ribavirin is making me a bit tired though already. So.............. gonna do the 6 month stint and watch the SVR with the Dr and see what happens.
Questions I have are, How long before the Ribavirin starts dragging me down ? Are some of you also fighting things caused by the combo therapy above and beyond the dragon itself ?
Trying to maintain a positive attitude but scared shitless and not very hopeful.
Elmo, great web page, that's some funny stuff :-)
Guy
Paul - 12 Feb 2007 10:08 GMT On 11 Feb 2007 22:15:04 -0800, "Guy" <phxazhepc@cox.net>, in message ID <1171260904.371456.8170@q2g2000cwa.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote:
>Hi, > [quoted text clipped - 45 lines] > >Guy I read that "Triumph........" book too. Seemed fairly reasonable until I realised the fella was selling stuff at a profit. I suppose that doing things that enhance the wellbeing can help a bit with fighting hep-c but won't beat it. I don't know if it's ever been scientifically proven but I think the general consensus is that people who feel better about themselves usually have a more efficient immune system and that people who get down easily are more susceptible to illnesses. I suppose that if consuming the items mentioned in the book can help with ones feelings of wellbeing then the immune system might keep the dragon at bay a bit longer. I doubt that the drop in viral load was much help though as it's not related to liver damage. My own viral load was a mere 91,000 but I had a fair bit of damage.
Anyway, you have 48 weeks of treatment ahead of you and the treatment affects everyone a bit differently. Apart from the first week or so, I felt OK on it until about week 6-8. Then it seemed to gradually build up until by week 16-18 it was feeling a real grind. Luckily, I only had to do 24 weeks as I got lucky with the genotype. You can't use my experience as a guide though. The treatment is a bit different for everyone.
elmoemerson@webtv.net - 12 Feb 2007 13:26 GMT Welcome back, Guy. I'll try to keep things 'on-topic' this time. You know any good fart jokes? Nothing to be scared of...you're either going to respond or you won't. Stick around this time....put on your space suit, buckle in, and enjoy the ride. In answer to your questions..... 'soon' and 'yes'. :-) elmo /////////// Hi, Just joined the group again after 5 years. It was a bit crazy back then. Lots of flames, rants and other unrelated BS. Seems to be a bit more on topic now. I found out I have 1B about 5 years ago. Was always a heavy drinker. Was drinking and not eating as much as I should have and got sick as hell. Anyhow, went for a checkup and ALT was @ 450. Slowly weened myself off of the booze and decided to take the alternative route. Bought Lloyd Wrights "TRIUMPH OVER HEPATITIS C" and took all his suggested supplements except Thymus, too damn expensive. Did that for about 2 years and started feeling better. Switched to Chinese supplements and did them for another 2 years. Actually managed to get viral load from 350K to 250K for whatever that's worth. Then last June the Dragon started kicking my a.s, dizziness and other flu like symptoms. Started missing time off from work, symptoms started becoming more frequent, went to a new Dr and decided to go the Interferon/Ribavirin route. Had avoided it all this time because I am a genotype 1B and had read about all the bad side effects. Was home sick from work Friday, had the Peg in the fridge took first dreaded shot. Actually felt better afterwards. The Ribavirin is making me a bit tired though already. So.............. gonna do the 6 month stint and watch the SVR with the Dr and see what happens. Questions I have are, How long before the Ribavirin starts dragging me down ? Are some of you also fighting things caused by the combo therapy above and beyond the dragon itself ? Trying to maintain a positive attitude but scared shitless and not very hopeful. Elmo, great web page, that's some funny stuff :-) Guy
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
bobby - 12 Feb 2007 13:35 GMT Guy, nice to see you again. Probably knew me as ragman back then, the banshee's have stopped chasin' and no sunglassed white socked dudes on telephone poles, so I''m back to Bobby again.. My best friend succumbed in Oct. He did everything including a transplant. A rough ride, when I look back at my complaints about the sides, I embarrass my self. Take the treatment, find someone you trust to reality chek with daily and be honest about what your thinkin so they can help ya get through. My friend was an Indian and when the winds blew cold he stopped the fight, but that SOB fought for 5 years longer than I....That plus the 4 before he became disabled and ya got yourself a hell of a warrior. I'm sure you can match him..To your better health.....Bobby
> Hi, > [quoted text clipped - 45 lines] > > Guy Thomas Wagner - 12 Feb 2007 13:53 GMT >So.............. gonna do the 6 month stint and watch the SVR with the >Dr and see what happens. Welcome back, Guy, but... 6 months? That's the treatment duration for genotypes 2 and 3, not 1 and 4. Typo, or did your doc screw up?
Thomas
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greyhackles - 12 Feb 2007 15:20 GMT >>So.............. gonna do the 6 month stint and watch the SVR with the >>Dr and see what happens. [quoted text clipped - 3 lines] > >Thomas Hoping for the best, I read that as meaning the first 24 weeks before he hits the "Go On/Don't Go On" EVR test...I sure hope he doesn't think 1B's only do 24 weeks total....
/greyhackles
Thomas Wagner - 12 Feb 2007 17:24 GMT >Hoping for the best, I read that as meaning the first 24 weeks before he hits >the "Go On/Don't Go On" EVR test...I sure hope he doesn't think 1B's only do >24 weeks total.... Hmmm... isn't the cutoff generally at 12 weeks if you don't get the 2-log drop? I'm not sure it would make sense to go through a full 6 months if the response isn't there. But maybe things have changed.
Thomas
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Guy - 12 Feb 2007 17:57 GMT > On Mon, 12 Feb 2007 10:20:13 -0500, greyhackles > [quoted text clipped - 10 lines] > -- > To reach me, complete my last name in the address. What is the "2-log drop" ?
greyhackles - 12 Feb 2007 18:53 GMT >> On Mon, 12 Feb 2007 10:20:13 -0500, greyhackles >> [quoted text clipped - 12 lines] > >What is the "2-log drop" ? Using the log scale, it's a relative measurement of the "viral load" drop from pre-treatment to whatever point during treatment the test is made. Before treatment begins you get a viral load count using any one of the numerous HCV quantization tests, then use the same test at various points during treatment - for g1s, that'd be 12 weeks, 24 weeks, and 48 weeks (end of treatment).
The easiest way to relate to "x log drop" is to consider each "log" to be a 90% decrease. So if your viral load was at say 1 million copies at start of therapy, the first log drop would lower that load to 100K copies, a second log drop would lower that to 10K copies, a third log drop would lower that to 1K, a fourth log drop would bring it to 100 copies, and a fifth log drop brings it to 10 copies...which is pretty much the sensitivity level for the best VL tests available. To get to "almost zero" from 1 million copies you'd need at least a six or seven log drop.
As you're new to the group, probably don't know much about the characters you'll find here, and can use some encouragement, I was g1b for over 30 years, started tx with a VL above 7 million IU, and was treated successfully during 2005-2006 with weekly 150ug Peg-Intron and daily 1400mg of Ribavirin, for the full 48 weeks. I had a full-blown EVR - I'm certain I was clear by week 5 if not earlier - and spent the rest of therapy dealing with severe anemia to the point I had the maximum weekly dose of Epogen for the last 35 weeks of treatment. (Ok, so it's not *totally* encouraging ;-) but I never missed a dose of drugs and it did work in the end :-)
Jump in any time if you have questions (or just need to vent ;-)
Cheers
/greyhackles
Guy - 13 Feb 2007 08:29 GMT > >> On Mon, 12 Feb 2007 10:20:13 -0500, greyhackles > [quoted text clipped - 43 lines] > > /greyhackles That is EXTREMELY encouraging, I can't thank you enough for sharing that with me.
greyhackles - 12 Feb 2007 18:39 GMT >>Hoping for the best, I read that as meaning the first 24 weeks before he hits >>the "Go On/Don't Go On" EVR test...I sure hope he doesn't think 1B's only do [quoted text clipped - 5 lines] > >Thomas The "2log drop by 12 weeks" hurdle is a relatively new consideration. While it is clearly informative, and we know the statistical correlation with slow/no response, not all insurance companies require it (yet) as a condition to continue treatment for g1s, and not all bclds use it in as a gate for their ongoing support.
For g1s, hitting undetectable by the end of 24 weeks is what my insurance and my bcld used as their hurdles. The 12 week test was of keen interest to at least me and my doctors, of course :-) but my doc had already told me he'd keep pushing on to the 24 week point unless I had no response at all at 12 weeks...
Cheers
/greyhackles
Guy - 12 Feb 2007 19:45 GMT > >>Hoping for the best, I read that as meaning the first 24 weeks before he hits > >>the "Go On/Don't Go On" EVR test...I sure hope he doesn't think 1B's only do [quoted text clipped - 21 lines] > > /greyhackles Greyhackles,
Thanks for the information, that explains a lot. So......... you are clear now ? Or if not say clear, it is undetectable ?
greyhackles - 12 Feb 2007 23:24 GMT >> >>Hoping for the best, I read that as meaning the first 24 weeks before he hits >> >>the "Go On/Don't Go On" EVR test...I sure hope he doesn't think 1B's only do [quoted text clipped - 26 lines] >Thanks for the information, that explains a lot. So......... you are >clear now ? Or if not say clear, it is undetectable ? Ah - you've clearly been around the block already :-)
Yes, you have it correct - either way. I've been officially undetectable since January 2005, which was my 12 week EVR test, and at last check (6 months after End of Therapy) the best test commercially available at the time (sensitive down to 5 copies/ml) was unable to detect any HCV virions.
As you obvious have heard, because the tests aren't absolute, there remains the possibility that folks with SVR are still harboring some ridiculously low-level of infection. That said, aside from some alleged instances of the "occult infection" paradigm (essentially a *very* well encapsulated infection) the vast bulk of available data strongly suggests successful SVR means the virus has been eradicated.
I'm all for that :-)
Cheers
/greyhackles
Guy - 12 Feb 2007 18:18 GMT > >>So.............. gonna do the 6 month stint and watch the SVR with the > >>Dr and see what happens. [quoted text clipped - 9 lines] > > /greyhackles Yes Greyhackles, that is what I meant, 24 weeks before I hit the "Go On/Don't Go On" EVR test. I know 1B's go for 12 months. Thanks.
Guy - 12 Feb 2007 17:55 GMT > >So.............. gonna do the 6 month stint and watch the SVR with the > >Dr and see what happens. [quoted text clipped - 5 lines] > -- > To reach me, complete my last name in the address. Well, if I understood the Dr correctly I go for 6 months and if there is a good response I continue for another 6. Sorry, I guess I wasn't clear on that.
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