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Support Groups and Real Life Worries


I went to my first support group two nights ago and out of 12 people there 10 had treated. Every male who treated had horrible side effects, and in 3 cases so bad they stopped treating. The 2 women had very mild side effects the worst being loss of their hair. Of the 10 that had treated 4 had cleared the virus and the remainder had not and were contemplating whether to treat again.

I also read about the "long term" effects of the treatment, long after you are done treating and I just am leaning to not treating. However, all my life I have "fought things" head on, and that is what is so confusing.

I am 54 and have always had normal ALT/AST and my biopsy was last week and two pathologists have both read it out as GRADE 1 and STAGE 1 to 1.5. I am genotype 1b.
One of the expert doctors said if it was him he would not treat and wait until there is something better down the line, and said that would be about 5 years. The other doctor said he would lean to treat.

I am healthy in every other way. I am a busy trial lawyer and I run on the treadmill about 30 miles a week and that exercise is what keeps me sane. The thought of not being able to run, and possibly not even be able to walk very far would be very worrisome to me.

I wonder what you guys think should help guide my decision?
Any imput would be greatly appreciated.
36 Responses
Avatar universal
One last thing. My last HVC total was only 86,400 and I know that is very low and before that it was over 3,000,000. Someone has said because it is so low I have a better chance of clearing the virus? Is that an important factor in the decision to treat or not?
Avatar universal
If you are only stage 1, dont drink much and are in overall good health, I would wait if I were you... i did not have real bad sides but I did not clear... and especially since you are geno 1, probably only a 50% chance that it will work anyway

no way i am going to re-treat with the current available drugs, i dont think there is much point, i have been told if you are a non-responder and treat again your odds are only 10% of clearing ... that is not worth it

92903 tn?1309908311
Glad to see you back. Of course, this is a very personal decision. To me, it all comes down to Risk/Reward. It sounds like with your lawyering, you may be putting more at risk than others would by treating, and with your lowish damage, you may have less reward to reap. A higher risk/reward ratio, if you will.

A couple random thoughts:

Don't bank on the 5 years for the new Protease Inhibitor drugs. Could be sooner, could be longer, could not work, could be added to today's combo therapy, ould be a miracle cure. Doesn't mean you can't watch the trials for a few years though. A lot more should be known in 12-18 mos according to my crystal ball.

Biopsies are not as accurate as we like to think. Small sample size can be an issue. I wouldn't bet the farm on yours being accurate. I would want another one, probably sooner than 3 years out.

Good luck.
119874 tn?1189759429
If it weren't for the anemia, my sides wouldn't have been so bad.  The anemia is hell though--if I'd known more, I would have been more vigilant about that early on.

Now that my amemia is more under control, I'm able to exercise every day--not as intensely as usual but I can come pretty close a few days a week.

This treatment ain't for sissies (which I am!).  But I'm on this site more at my low moments than when I'm feeling like exercising (I'm guessing that the support group is selective in other ways).

This is a very tough decision.  You have to calculate a risk/benefit ratio without knowing the numbers (who was that that compared predicting side effects to predicting the Superbowl?)  With you in spirit.  Deb
119874 tn?1189759429
Full disclosure.  I'm a 3a so my chance of response is (theoretically) better than 1a.  That factored into my starting treatment with a basically decent liver.
Avatar universal
FYI I had no anemia at all from virimadine phase III trial I was on... it seems that is the worst side of all so even though tx did not work for me, I hope that this drug will be out soon to replace riba for everyone suffering from anemia ...

but...does anyone know if virimadine is less effective than riba??  Maybe if I treated with riba/peg i would have gotten a better response... wtf knows I HATE this ****, I am just waiting and hoping for better tx right now...
Avatar universal
Yeah and the next thing you'll be telling me "to treat or not to treat" has nothing to do with halloween.
Avatar universal
and your wearing a costume? Here i thot your mom just dressed you funny..
Avatar universal
Goof said: No way I could be entrusted with someones legal case. It wouldn't be right.

I can't even be entrusted with my meds lately. For my second ribavirn dose today, I either took 600mg ribavirn(correct dose) or 1200mg. I should know in about an hour. If I climb the walls, the dose was correct. If I hit the ceiling...

-- Jim
Avatar universal
Forgot ya ther Goof-
Now FINALLY it all makes sense. Since we first started on this  sordid little vacation called tx, I've been trying to rectify the very observant, intelligent, graceful, caring dad, I've seen in your posts--with the ribald, bathroom focused, orifice of the day, listen up ladies, down home, no need to cut the grass, Goof that I see in your other posts. NOW I get it...
it's job related. Now that I know read your post saying you work in an anal something field. Man, glad that's rectalfied!
Avatar universal
valid question & i am by no means an expert..but like you i have hepc type 1b;i am 50 yr old male in good health,otherwise,annd now into combo trx 15 weeks...startin viral load was 6,000,000 ;4wk vl 1280-so the meds are killin the vrus..and for that i am v happy...unlike yu my liver was at stage 2 maybe 3& grade 2..i was also gettin some debilitating effects from the virus-joint pain,depression,fatique...All that said,the meds are incredibly nasty-i don't like how i feel whatsoever:i have MUCH greatr fatigue becuz of anemia(hgb went from 16.5 to 10.1 in 12 weeks) i am just plain lethargic now.Oh also sick-not pukin sick,just a kinda constant malaise & irritable&depressed(go figure) & much lowered cognitive functions-i'm the guy w/ mouth ajar&glazed,puzzled expression lurking in your local video store....I mean trx is Doable & nobodys getting any younger-hint,hint-we all want to rid our bodys of this nasty uninvited parasite-but these are nasty toxic drugs& by no means a walk(or run) in the park.....hey,you do much pro bono work? just in case i gotta rob a bank to buy procrit.......Good Luck
92903 tn?1309908311
Couple more things from me.....

I've probably taken to treatment pretty well, comparatively speaking, though I have been bit by the anemia bug. I work in an analytical field, and I just plain am not good at it right now. No way I could be entrusted with someones legal case. It wouldn't be right.

On the risk/reward, that you are otherwise in good health probably cuts the other way - better chance of coming through well. But who knows?

Meant to mention this in your last thread, concerning the Can-do-man's crack about saving gas going to your support group. You'll have to forgive him. He knows not what he says. Until we set him straight last week, he thought a support group was a club where they discuss the merits of using spandex vs. underwires in womens undie-thingies.

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