hepc relapse

[dranurag]

I completed 1 year of peg and rabitol but relapsed after 1 month of stopping. Was put on conventional IFN and after another 6 months am HCV RNA negative. First time I became negative after 20 weeks and am genotype 3

[zazza]

I guess they may have you on interferon as a maintenance drug then. Well, as I said, I am only a hep C patient, not a doctor. I am happy to hear that you have consulted more than one doctor and doctors that seem to have good qualifications.

I wish you the best.

[dranurag]

I am being treated by the head of hepatolgy at All India Instt of Medical Sciences--- the biggest hosp in India. I have taken a second opinion from another renowned hepatologist who has been entrusted by the govt of India to develop Asia's biggest Hepatobiliary instt. I have actually completed more than 72 weeks and will see my doctor in 3 days. My personal gastro says he may continue me on IFN. Another junior doctor in the same instt once said they may give me this lifelong. You would agree that India has got a big number of pts and its doctor's opinion matters.

[zazza]

I just want to make sure you know that we who write on this board are not doctors, we are ourselves hep C patients who share what we have learnt and experienced.

I do know that raised iron levels is not good if you have hep C, but I do not know the connection (if any) with the treatment drugs.

It seems you were properly dosed the first treatment, although weighing 65 kg you could as well have been given 1000 mg ribavirin, since that is the usual dose for 65 kg and up to 85 kg.

I cannot see how conventional interferon without ribavirin would get you to SVR however long you treated, when pegylated interferon and ribavirin did not. It seems to me you have pretty much tested what can be done for geno 3's at this time, since you even extended treatment to 48 weeks. Your biopsy is a little bit worrisome though. At least it is not stage 4, that is good.

My personal opinion is that you will not gain anything on continuing the treatment regimen you are on now. I would spend time researching your doctor's statements about your high iron levels and see if you can verify them or not. Hemolytic anemia is often caused by ribavirin, that is true. What were your hemoglobin levels during treatment? If they were not below 10, then that was not a problem.

This board is a great place to ask questions and learn about hepatitis C. Keep coming here. This is a disease where we need to gain knowledge about our condition to influence treatment decisions. At this point this is the best you can do. There are several genotype 3 relapsers and non-responders here.

Have you gotten a second opinion from a perhaps more experienced hepatitis doctor? A hepatologist perhaps? This is also something well worth doing.

Good luck!

[dranurag]

thanks. I took 1.5 mg/ kg peg and 800 mg ribaverin { I was 65 kg} in the initial treatment. Now in retreatment I am only on conventional IFN without ribaverine as my Dr said the latter caused hemolysis and raised iron levels which got deposited in my liver and further caused damage. My pretreatment biopsy was stage 3.I remained negative on treatment in the first year from 20 to 52 weeks.  The test was not done at 12 weeks as it was coming down slowly at 4 and 8 weeks------pretreatment 1835819 copies, 4 weeks---- 728775,  8 weeks -----4672. Stopped therapy after 52 weeks for 4 weeks and it reappeared at 528784 copies/ ml. according to WHO 1IU/ml is equal to 4 copies/ml

[zazza]

"What dose of pegylated interferon and ribavirin were you on the first time? If you were not underdosed, your slow response (week 20) the first treatment should by itself have indicated that you are a non-responder."

I guess since you have managed twice to reach undetectable although late in treatment, the question is if you should be called a "partial responder" instead of "non-responder".

A partial response would indicate greater chance of success with treatments in the future which include a protease inhibitor and/or a polymerase inhibitor.

[zazza]

Conventional IFN has lower SVR ("cure") rates than pegylated interferon. I don't know if high levels of iron and ferritin are an accepted reason to change to conventional IFN. Maybe someone else on the forum knows about this? What dose of ribavirin are you on? Your doctor's strategy worries me. One does want a good treatment strategy to take interferon for such a long time.

Since you relapsed after the first 48 weeks, you will have to look at it as if you restarted a separate second round of treatment. If I understand you correctly, it then took you 6 months to become UND. This does not look good for the future.

What dose of pegylated interferon and ribavirin were you on the first time? If you were not underdosed, your slow response (week 20) the first treatment should by itself have indicated that you are a non-responder.

I just read that Telepravir, a protease inhibitor, is being tested in trial this year for genotype 2 and 3. Have you had a biopsy? If your liver is not that bad off, it might be better to wait for the new drugs hopefully approved in a couple of years.

[dranurag]

I am from India. I have now  completed 72 weeks with a gap of 4 weeks after 48 weeks. I became positive again in those 4 weeks hence restarted. Conventional IFN is not peg but thrice weekly 3miu. I took initially peg but developed high levels of iron and ferritin so changed to standard, conventional IFN. My doctor wants to continue beyond 72 weeks as he says I am difficult to treat category may be "non responder"

[zazza]

I see you already treated for a year, and then relapsed. What is your doctor's plan to prevent relapse this time? What has he done differently?

[zazza]

You are a geno 3 and, if I understand it correctly, were not undetectable even by week 12?

What do you mean with "conventional" interferon?

Are you treating with ribavirin as well?

How long are you planning to treat?

What country do you live in?

As a geno 3, you need to be undetectable preferably at week 4, but at the latest at week 12. If not undetectable until somewhere between week 5 and 12, you need to treat for 48 weeks to up your chances of SVR. If detectable at week 12, SOC (standard of care) for geno 3's is to stop treatment.

Please write more details of your treatment. The information you have given so far seems confusing.