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Avatar universal

Maintenance Interferon, Clinical Trials, etc.

Hello,
I recently  completed 48 weeks Pegasys Copeg for type 1a My biopsy is stage 4 cirrotic. After not responding at week 12 my GI thought I should try to continue the 48 week cycle, which I did. The viral load was finally reduced from 3 million to 85,000 but not cleared.
My GI had originally thought after the 48 week cycle I would continue on a half dose of Interferon indefinately to prevent futher liver scaring. Now he says that there is only "indirect evidence" that this procedure has any affect. He is suggesting I try enrolling in a clinical trial for one of the new protease inhibitor drugs. Vertex, Shering, etc.
My question is: Does anyone know of any studies that prove that maintence interferon works to prevent liver scaring. Also my GI is saying that retreating with Pegasys now or in the future is more or less pointless. Does anyone have an opinion about that.
Lastly has anyone been successful in getting enrolled in a clinical trial for one of the new generation of TX options.
Thanks
14 Responses
Avatar universal
There are other type of interferon that may work better in your body.  Maybe you should get another opinion.  I never responded to Pegasys at all and in fact, my viral load and LFT's actually went up.  When I was on regular interferon, the Peg-Intron, not Pegasys, plus regular interferon and Riba, I had a good response, but I had to treat longer with it, too.  Also, my body gets a better response with higher doses (off-label).  Maybe you need a doctor who is willing to do something other than cookie-cutter treatments.  A doctor who is willing to treat off-label.  I had to go to a doctor that is 2-1/2 hrs away from here.  I could not find a single gastroenterologist in my county that was willing to treat me.  They took one look at the fact that I had tried treatment and had only a partial response and then, they would even agree to see me, treat me with maintenance, or ANYTHING.  These are only my experiences and not intended to be medical advice to you.

Susan400
Avatar universal
Do you mind if I ask when you say "I had a good response, but I had to treat longer with it, too. Also, my body gets a better response with higher doses (off-label)" do you mean you cleared and are you SVR now? Also how much longer did you have to treat and what dose? This would be helpful information to me if I get a 2nd opinion or convey this to my current GI. I don't think my current GI is resistant to off label approaches but he doesn't seem to be aware of many options. ie he never heard of Infergen, etc. Thanks
87972 tn?1322664839
I don't believe there is much conclusive evidence available out there supporting the efficacy of IFN as an anti-fibrotic Rx. While no longer recruiting, the HALT-C study is still ongoing, and might shed some positive light on this subject. In the meantime, you might want to contact the project officer and pose this same question to him--his opinion might be enough to influence your treatment options.

NIDDK Project Officer
James Everhart
NIDDK
2 Democracy Plaza, Rm 655
6707 Democracy Blvd, MSC 5450
Bethesda, MD 20892-5450
Phone: 301-594-8878
Email: "mailto:***@****"

I know that my doctor has two cirrhotic patients currently on maintainence therepy, but he does other off-label dosing as well. I wish you the best of luck in your travels,

Bill
Avatar universal
I haven't cleared yet.  But, I'm still working on it.  My last viral load, was down to 430, but this was a big drop from the beginning number which was up in the 7 million range.  I'm on double dose of Riba and daily Infergen and Procrit for the anemia.

Susan
Avatar universal
check this artical out. there are many studies that show peg helps reduce fibrosis. also i would stop tx now to get on the vx 950 trials as it sounds real good.
sorry about the lack of response to tx.
good luck
Improves Histology in Cirrhotics
http://www.natap.org/2005/ias/ias_49.htm
bobby
Avatar universal
hi susan, i'm so sorry to hear about you and otis' non response to regular interferon... if you don't mind me asking, what are the sx you are experiencing from the daily infergen??? Are you going through the horrible time we hear about on infergen??? also, what exactly is the riba dose you're on???

i pray someday you both clear, you're in my thoughts and prayers!!!

sandi
Avatar universal
one more
bobby
http://www.clinicaltrials.gov/ct/search;jsessionid=9A2F343D2C56A22A2C1F2EF54CCD34EC?term=hep+c
Avatar universal
I still think looking into the Consensus (Infergen) is something with your liver damage that I would do.  

I was going to do it if necessary and would still if I should relapse at any point, after a few months rest and detox for my body.  

You can google it and get all sorts of great articles and ask your doctor about it that way rather than saying "on the internet forum they said" that never works LOL.
87972 tn?1322664839
Hi Susan,

Glad to hear your you
Avatar universal
As a cirrhotic stage 4 I would think you'd probably want something a bit more aggressive than just maintenance...even if it were proven to work?

Unless you absolutely can't stand it - please consider not giving up, there is always hope and just because one treatment didn't work for you doesn't mean another wont.

...if you are one of the one's who CAN get SVR from trying a different type of tx perhaps...it seems worth pursuing the possibilities to me, especially with bad damage.

Just my humble o.

I just hate to hear you sound defeated when perhaps it's just the beginning of good things coming for you!
Avatar universal
You asked what dosage of Riba I'm on and that is 1600mg (8 pills) daily.  It's off label big time.  My Dr. is basing on a study done over in Europe with using double dose Riba in combination with your regular interferon.  He watches my lab work closely.  Actually, I have good days sometimes.  I have bad days.  But, it was the same deal with the Reg. Intron.  On the Infergen I have more muscle aches and headaches.

Susan
Avatar universal
Thanks for all of your valuable input and suggestions. I hope I don't sound too defeated (NYgirl),  I certainly don't feel defeated. I found out about my condition a year ago and the education process around this virus has been intense. I'm definately going to pursue the best options available and so all of your references and research links are a great help.
Now I'm actually excited to take a little break from TX and enjoy the spring and summer with my family. Talk to you all soon.
Avatar universal
Your GI is more or less correct. There are no studies conclusively suggesting that mainteance therapy is useful. That said, many good hepatologists still use it. It's one of those controversies in treatment. If you want to google the "Halt C Trials" you can get up to speed on this. Hopefully, these trials will answer your question one of these days. Regarding re-treating with current drugs -- I like the idea of getting into a trial. Generally, if you respond as slow as you did to interferon the first time, you'll probably respond in a similar fashion again.

The potentially exciting thing about some of the protease inhibitors in the pipeline is that they've dramatically reduced viral load in short order in combination with Peg. So Vertex is one drug to keep an eye on when they have a trial open for non-responders. Meanwhile, you might try a consult with a hepatologist, however they don't always agree as well.

Are you planning on a post tx biopsy? Maybe the treatment did your liver some good? If so, one possibly strategy is to try mainteance until a trial comes along, but again no guarantees it will do anything except make you feel like sh*t.

All the best luck.

-- Jim
87972 tn?1322664839
Thanks for the good thoughts. Have you reached any conclusions yet regarding the switch to Infergen? I thought you might have been in touch with you Tx doc in the last couple of days. I
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