Interferon&Ribavirin --> Jaundice?

Hi everyone,

I've been looking for the right place for months... and think that I've finally found a safe place to ask questions, share my thoughts, and hopefully encourage others as well!

My boyfriend was diagnosed with Hepatitis C a few years ago, but could never afford treatment... until now! He is finally beginning the Interferon & Ribavirin treatment!

Some background information:

He is 30 years old and has been drug-free, alcohol-free, and cigarette-free for 5 years.

Genotype: 3a
Viral Load: 860,000
Liver situation: Stage 3 liver fibrosis

He does not currently drink, smoke, or do drugs (although he used to). He eats very healthy and remains quite active. He is, however, easily exhausted and has experienced moments of jaundice in the past.

The current situation: My boyfriend started the treatment on May 17, 2013. He experienced the usual symptoms: high fever, exhaustion, soreness, and other flu-like symptoms. Recently he's been experiencing a lot of jaundice. When he went to the hospital on Saturday, he was very yellow and the doctor took him off of the treatment, until they get things more under control. They told him that they needed to "cleanse his blood." On Monday he was given only "half" of the Interferon shot. He is supposed to be injecting Interferon every other day and taking Ribavirin tablets every day.

I'm just really confused... is jaundice a typical symptom of the treatment??? What may it mean??? I've tried calling local hepatologists, but no one will speak with me, because I myself don't have a referral to see a hepatologist.

My boyfriend lives in Russia (he's Russian) and there's just so much that I don't understand about this process and can't directly ask the doctors. I'm moving there soon, and hoping to get as many answers as I can so that I can support him in the best way!

Thank you all so so much!

Blessings,
MayaSava

Hi Maya, welcome to the forum.

I am the loved one of someone with Hep C Genotype 1a. Mike did the treatment with Interferon and Ribavirin in 2003 and did not clear the virus. He still had a Viral Load of 7Million and was very ill, so after 6 months so they stopped the treatment.

The side effects were difficult. I imagine your boyfriend is having a bad bout with his liver and that is why they have stopped the treatment for now. You have to think of this like a chemo treatment for cancer....both can be deadly and the drugs you take to clear them are often very difficult to take.

Mike's doctor wanted him to take 90% of his doses 90% of the time and it would still mean he was being compliant with the protocol. I would think a few days break would fall in those guidelines while his liver rests up a bit.

The jaundice is part of the liver disease not the treatment I think. Mike's blood counts were so low during the treatment they gave him injections of neupogen and Procrit also. the first to build up white cells and the second to build up red cells. They were expensive, but we got a special program from the manufacturer that made it easier to pay for them. Mik ealso had some platelets along the way as his clotting was really bad.

When he finished the treatment, he took a year to get his strength back. Though he still had Hep C and cirrhosis, the doctors told him that he had a good 15 years in him before he might die of the disease.

As he returned to drinking, it was only 5 years before he was so bad he needed a transplant to live!

He was transplanted May 1, 2011 and is over 2 years post transplant now. He is not 100% well, but he is alive and had a good quality of life...enjoys each day though he is not as active as he would like to be.

Right now his Hep C Viral Load is just over 2 million. Shortly after transplant it was up to 57 million!!!! So Viral load varies.

The treatment time is rough. I hope your boyfriend can begin again and that he has a sustained viral response. But if he does not, there is likely time to wait for a second treatment...there are new drugs coming available that are supposed to be easier to take.

Please know that Genotype 3 has a higher viral response than 1a and for that I would be encouraged.

Maybe this is just a bump in the road and he will be doing better soon.

I hope you can be reunited soon. Where are you now?

Best,
Mama Lama aka Carol from Florida

Maya aka Better in VT just now....

I found a short article that is pretty clear on fibrosis v cirrhosis:

http://www.sinomedresearch.org/hcv/articles/c7_fibrosis.htm

I have to go out now, but will return to my desk later this afternoon and I will check the website again to see if you have posted again.

There are several good articles in the Resources folder at the top of this forum.

Best,

Carol from Florida

Maya/Bette, welcome to the forum! I may be prejudiced, but I absolutely think this is the best place for info and support.

First of all, your b.f. did the BEST thing by stopping drinking, and also drugs and tobacco. As Mama/Carol said, genotype 3 is much easier to treat than 1a and 1b.

I've never actually seen anyone post here about jaundice as a side effect of treatment. It could be that it is causing a flare of his liver disease (it IS a toxic cocktail) and some time off will give his liver a rest. In answer to your question, treatment will not clear his liver of fibrosis or any damage already done, but if he clears the C, damage will not progress.

I was diagnosed with hep C, genotype 1a (most common one in the USA) in 1993, and at the time was 7 yrs. sober from alcohol abuse and decades off drugs. I did continue to smoke until 2002. The only treatment available at the time was interferon injections 3 x a week. After a few weeks, my white count plummeted and I first had the treatment cut to twice a week. Then the GI doc cut the dosage in half. These measures didn't work, so I was taken off treatment altogether. I tried again a couple of months later and the same thing happened. I was never offered Neupogen or any other med to increase my white count. Maybe it wasn't in existence back then.

I didn't have treatment again. I was besieged by many medical problems and surgeries, one after another, culminating in a transplant 18 mos. ago. I've had many complications since transplant and my hep C is ruining my new liver. Mayo keeps putting off treatment, both because of my health problems and because they are anticipating "something better" in treatment.

Your b.f. has youth on his side, as well as 5 years free of substance abuse. Those are VERY positive things.
If he finds that he cannot take the interferon-ribavirin combo, a better, oral only treatment with NO interferon is supposed to become available in the states in Oct.

I thought that medical care is free in Russia. Am I wrong about this?

Meanwhile, he should eat NO red meat (it's hard for the liver to process, especially a diseased liver.) He should eat lots of fresh or frozen fruits and veggies and keep his salt intake to the absolute minimum. He can eat skinless chicken and turkey, fish and shellfish, dairy, all types of beans (rinsed well if canned), and soy products. Has the availability of these foods in Russia improved? Pure water is the best beverage for him to drink.

Also, be sure to check out the info at the top of the page entitled Hepatitis Resources. It deals with all types of liver disease, not just viral hepatitis.

Please do keep us informed about your b.f.'s journey, and also how you are doing.

Hugs,
Connie

Maya.. yes, I'm glad you found us... we have a group of people who are on all sides of this issue. Yes, I saw Corrie Ten Boom on tv years ago and was so impressed with her story that was written in the book "The Hiding Place". She has always inspired me. Of course, she is dead now but her legacy lives on.

Keep reading. You and your boyfriend will have many questions and we can help with some of them. Keep reading through the threads. Most important you have found a great bunch of people who have information and who care.

Sandia

Maya/Bette, what kind of doctors is your b.f. seeing? He should be seeing a hepatologist, or at the least a GI doc. I'm not sure how much is known about hep C in Russia.

Thanks for clarifying "free." I think the key is paying money up front.

When there are significant lab changes, as happened with me with the very low white counts, they will usually tinker with the dosage or # of times it is taken a week. If that doesn't work, they will stop treatment temporarily or permanently...or wait for something better with fewer side effects, as they are with me.

Would it be too expensive or difficult for your b.f. to get a Visa to come here temporarily, to be treated? I know that people come from all over the world to be treated at Mayo. They have transplant centers in FL, AZ, and the original one in Minnesota.

Hugs,
Connie

             hi again,   gilead is starting trials of gs7977+ gs5885, in Milan italy.  you dont need to be a resident, just be able to stay for whole tx.  getting into this study is like hitting the lottery. 

                                 barry

I'm not sure but 2 weeks ago my brother started treatment and now his bilirubin is way up there. He developed pancreatitis and is now hospitalized. They are adjusting his drugs and took him off one called telaprevir. I hated for them to stop it because in two short weeks his viral load went from 69 million to 700k!

Bilirubin is slowly coming back down from 32
He is in pain, is weak, and has waking dreams but we shall see. Liver disease is the worst, as you know. I marvel at how people can get thru it all. It really baffles me. I'm just not that strong.

Bless all sufferers of this darned disease. It makes me sick that big Pharma might be playing politics with people's lives.

Okay my rant is over. Wish I could be of more help with the bilirubin thing. I'm getting all my info from another brother who doesn't take good notes down there at Mayo Clinic.