RETRYING TREATMENT?

[bobbyullc]

I AM BEGINNING TREATMENT IN SEPT. I KEEP READING THAT SOME OF YOU AHD TREATMENT THAT DID NOT WORK AND ARE DOING IT AGAIN. IS THAT RIGHT AND IF IT DOES NOT WORK THE FIRST TIME DOES IT OCCASIONALLY WORK THE NEXT? I AM WORRIED.

[layla]

A hard road, that is an understantement for sure.You must be fustrated handling all this. I'm glad your brain is fine and hope your leg will be too. It sounds like it may be a while before you actually know. I'll keep in you in my thoughts and hope for the best news from your doc Thursday. I'm more of an occasional lurker now but I'll be watching to see how you do. Best to you Mike. LL

[mikesimon]

Thanks so much for your kind words and interest in my condition. I think I'm doing pretty well. I see my doctors Thursday and then I should have a better idea. I see the neuro-surgeon and the ortho-surgeon. I think my brain is fine - it's my leg that worries me but I have begun to bear weight on it and am walking with crutches so things are improving. I will say that this has been a hard road. Mike

[cuteus]

like scruffy mentioned, think about doing this ONCE. If you are still positive for a viral load(vl) like i was, at wk 12, insist on  extending treatement up to 36-40 wks beyond the first negative PCR. That way you know you gave it your best shot the first time. If you hve an Early viral response, 48 wks might or not be enough, at stage 3, I would go as long as i could tolerate it, since studies show interferon has antifibrotic properties.

[scruffy]

Wow Bobby-falling back into using after all that time scares me. I've been sober 28 years. But on the other hand, the hcv probably would have caught up to you anyway. The answer to your question is that some people treat more then once and DO clear the virus. But if there is any indication that you are responding slowly or poorly it would be better to extend the treatment the first time rather then have to treat again later. I'm facing treating again myself if my biopsy in Sept. indicates the need.

[mikesimon]

I did 3 times and reached SVR the third. First tx was low dose regular interferon 3x per week and 800 mg ribavirin for 48 weeks. 2nd time was peg-intron and 800 mg. ribavirin for 48 weeks. 3rd time was Pegasys and 1000 mg. ribavirin for 73 weeks. I was type 1 and the third tx my starting viral load was 6.5 million. I'm also a liver transplant recipient so my odds weren't all that great but I have been clear for nearly 14 months so it can be done. Good luck. Mike

[layla]

Wow 14 months now...congrats on that! I think your story is very encouraging. I hope all is going well for you. How is your recovery from the accident going? LL

[bobbyullc]

GOOD LUCK. A FRIEND OF MINE IN AA COULD NOT HANDLE THE DEPRESSION FROM TX AND DIED SEVERAL MONTHS AGO FROM IT. I DO HAVE THREE OTHER FRIENDS WHO HAVE CLEARED IT AND ARE WELL. MEDICINE IS MOVING FAST ON THIS AS THERE ARE AT LEAST 2 MILLION CASES AND THE FINANCIAL INCENTIVE IS THERE.MY DOCTOR SEAMS CONFIDENT. BUT HE DOEN'T HAVE IT. I AM ANXIOUS TO SEE WHAT MY INSURANCE BC/BS PAYS. TO DATE IT HAS COST %2,000 OUT OF MY POCKET

[sunspot]

Don't dwell on the "IF's". That will drive you nuts. Remember what us AA'ers learned in AA. "One day at a time". I'm half way through treatment and still virus free.

Dana

[doll face]

I did two rounds of tx. The first 48 weeks on pegintron/rebetrol. Relapsed after 2 months. Second round 72 weeks of Pegaysy/Copegus combo. Also was on procrit, neupogen and AD. And yes!!!! the second time worked. It can be done. I am living proof. Good luck.

[tina-b]

Was the Pegasys easier than the peg-intron? Someone mentioned Infergen for 2X relapsers. Did you try that as well? Thank

[mikesimon]

I found the Pegasys much easier to tolerate than Peg-Intron. If you read the published side effect profiles of the two drugs they line up pretty evenly but from my subjective perspective it was day and night. I was nauseous all the time with the Peg-Intron, for one thing, but with Pegasys nausea wasn't a problem at all. I could go on and on but the bottom line is Pegasys was a lot easier on me. After relapsing after my second tx the hepatologist wanted me to do Peg-Intron again, his reasoning being that since I cleared with that drug it was proven effective. I couldn't argue that point but I convinced him to let me try Pegasys because I truly didn't think I could do another round of Peg-Intron and especially an extended treatment which I wanted to try. At that time Pegasys wasn't on my Insurance company's formulary so I had to work hard to get it approved but it was worth the trouble. I didn't try Infergen. I didn't relapse twice - the first tx I didn't clear. I don't know if Infergen was even available at that time (Jan 2003). Mike

[scruffy]

Bobby, the depression also kicked my ass. I did'nt use an anti-depressant but if I treat again I will use an anti-depressant. I have bc/bs and only payed the co-pay for the two meds. I had no trouble with them fortunately. I wish you luck. frank

[bobbyullc]

I AM TYPE 1A AND A VL OF 154,000(LOW). I HAVE HAD IT FOR 34 YEARS AND THINK IF I DID NOT GO ON A ONE YEAR HERION BINGE AFTER 33 YEARS OF ABSTINANCE I WOULD NOT HAVE TO TAKE TREATMENT. YES A BIOPSY SHOWS STAGE 3 UP FROM A MARGINAL 2  7 YEARS AGO. I HEAR THE ODDS ARE 50% AND I WAS WONDERING IF IT DOES NOT TAKE TIME ONE IF A SECOND TRY MAY WORK? THANKS.

[scruffy]

Bobby,others here can fill you in on the success statistics. What Genotype are you and have you had a liver biopsy? That info can help people here to tell you what the odds are for successful treatment. Even unsucessful treatment can reduce fibrosis and improve your liver health. Read earlier posts to pick up all the info you can. Initially we are all fearful of the disease and the treatment. Time and knowledge will restore your calm. frank

[susan400]

I've retreated many times.  I guess that the reason is, for me, is that I'm trying to delay cirrhosis.  I handle treatment fairly well, all things considered and my doctors don't seem minding putting me on it again.  I have progressed a little further with each on of my biopsies, I've had 3.  I've been chronic/active for the past 11 years that I've known of it.  I've had it for a total of 22 years.  I am a genotype 1A and 1B.

Susan