Relapser with Trial questions

[mphillips]

Just found out today that I have relapsed. I finished tx on 03/27/08 for geno 2a, 24 weeks riba and pegasys. I was undetectable at 12 weeks,24weeks,28weeks and now positive at 36 weeks. I am 44 yo male with cirrrhosis don't know how long or how I got this wonderful disease.I go to see my gastro on 06/20/08. Of course I still owe the pharmacy that my insurance co uses money for the last round of meds,so I can't get anymore from them. Does anyone have any suggestions on how to get in on any trails going on? My gastro told me in an eralier visit that he would suggest we try Infergen if I relapsed. Has anyone had success with infergen? How were the sx? I really thoght I had this nasty bug beat by being und 12,24 while on tx and then 4 and 12 weeks post tx. Any help would be greatly appreciated.

[rochammer]

Hi
The first TX started on 10/04 24 weeks. The second 10/05 48 weeks.  I guess 6 months between.  I think the worst part was my doc had the information about treating longer for stage 3 over 50 but would not continue because my sides were very bad. Low hemo 11. that’s was with epo once a week (could not walk up a set of stairs) I wanted to continue you know do it once do it right.  He was in shock when I relapsed. There is not much proof that 48 weeks is better except for antidotal like me. Just experience of the individual docs. There are absolutely no odds for a second round of Tx for us 2’s . Just not enough of us around to get any odds

If you tolerated TX well just treat again. Try one of the drug co free programs they very good about helping.

Rock

[FlGuy]

As you've seen, several relapsers. Many of us failed with 24 weeks and successful with about 48. To me (geno 3), it seems reasonable to go with the peg and riba (with maybe dose adjustments) for longer than to go right to the 'nuclear approach' with infergen. I took a break of 10 months in between to get my head into again and get a little more prepared physically.

[mphillips]

Good luck, I hope you will get your SVR at week 4

[mphillips]

I approached my doc about continuing tx because I tolerated it well and he pretty much blew that idea off, so I talked a hepatologist at Mayo in Jax,Fl about it any he said that there was'nt any proof that it was beneficial. It seems that they don't know too much more than we do. Your proof that extended tx does work. What time frame was it from when you relapsed to when you started second tx?

[marsfreek]

I relapsed after tx, I waited for five years because everyhing was stable. Then i staerted getting sick again. in 2004 I was a consultant at an infergen(then was amgen) svr for relapsers is 70%.
I am now taking infergen and the sides are so much easier than peg that I am amazed.
had 4week blood drawn yesterday and will let you know when I get the results...

[rochammer]

I am a geno 2 – treated a second time and now SVR. I don’t understand why the doc’s don’t treat us longer 48 weeks if over 50 stage 3 and up. I did Pegasus 24 the first time then   pegintron 48 weeks.

You will find a way to treat again –good luck

[mphillips]

Thanks for the responses. Yeah the relapse really does stink. I did not get tested at 4 weeks only at 12 weeks during tx and then the final (24th) week. I then tested 4 weeks after tx and again 10 weeks after tx. My dr said I could test monthly if I wanted to, my thinking was that if I did relapse I could start on some other type to knock it out quickly. I did'nt know at the time that I should be tested at 4 weeks and now I have some doubt about my dr's knowlege on this subject.

[redrodeo]

Truely sorry to hear the news. I've had that news before and it really bumed me out. I have geno 3a and yes 2 and 3 are to be so responsive but when they don't its a let down.
They would probably recomend 48wks and next time. Since you have cirrosis I am surprised they didn't the first time. Can you handle 48 wks? Also like someone said above. Were you checked within the first 4 wks while on tx? That seems to be a big indicator. I just finish 24wks on May 11 so I don't know about the SVR.
Chris

[comeagain]

Yea relaps stinks.
I have also relapsed once now on sec tx longer time higher doses on both peg and riba
this time.

I`m a geno3 and we geno 2 and 3 thought we had good odds in clearing ,  but when not huge disappointment!

The positiv is that you responded, the only thing i can say to you is that I´m with you in your pain let it out man.

In some days weeks whatever it takes to melt, dont keep hanging in the air, try to get the best hepatologist for adwice continue to write in her.


ca

[HectorSF]

Sorry to hear about your relapse. After coming so far, it must have been a great letdown. But hang in there you are doing the right thing by trying to rid yourself of the virus while your liver can still handle treatment.

66% of genotype 2/3s become UND by week 4, which gives a patient of your genotype a 90% SVR rate. When your virus level became undetectable at week 12, your chances of SVR were 49%. So you had a 50-50 chance and you gave it your best shot and since you respond to treatment you are a good candidate for retreatment.

When you retreat maybe your VL will become UND by week 4? That would give you great odds of achieving SVR.

Best of luck!
Hang in there.
Hector

[FlGuy]

Relapsing stinks. The doc has an option to do peg and riba again, but with a few twists.  A few questions.  How much riba did you take each day?  Did you take all you meds on time and on schedule?  You write that you finished on 3/27 and that you were undetected 4 and 12 weeks after tx and then showed a relapse after that. But you've only been finished 10 weeks?  Have you had 3 pcrs tests after the last meds were taken?  

[Magnum]

As Trinity4 mentioned Infergen. Yes, it was the only drug that did work for me, but please read my dire warnings of this powerful and unpredictable drug... In the search box on the upper right of the page, type Magnum Infergen....

Magnum

[Magnum]

I'm a non-responder to traditional treatments. The doctor now wants to try and double-dose me on Pegasys at two shots daily, along with the traditional 1200mg Ribavirin. Through his immense experience, he feels this will do the job. Ask your doctor...

Magnum

[Trinity4]

Firstly, let me say how sorry I am that you did not get your SVR.  I know how disappointing it must be.  I wish I could give you some info regarding infergen but I have no experience with it, however, there are many here that do and I'm sure someone will lend their expertise. Wishing you much luck with future tx and hang in there, hopefully you will beat this.
Trin