pegasys, ribaviran, vicrellis cause severe anger issues

Indianawife , Welcome to the forum . We have a lot of other caretakers here who have experienced what your going through and I'm sure one will be here shortly to give you some suggestions . I'm a patient and don't have the Hep.C virus .

 Ziff

Hello, I.W. and welcome to the forum.

I am an assistant moderator here and though I'm sorry you have had to search for a forum...you have found a REALLY GOOD ONE.

I, like you, am a caregiver of a loved one with Hep C. And I've been where you are so many times I can't begin to tell you how many times I have cried.

The first bad time was ten years ago when Mike took the Interferon and Ribavarin treatment. He was SO ANGRY ALL THE TIME IT MADE ALL OF US UPSET. We have 3 adult children and while no one was living at home, he was horrible to us all. It was him him him him. Every moment. I tell the story of the day he jumped out of the car while screaming at me that I couldn't drive....just jumped out! He could have been killed.

Once we were at a birthday party for his 2 year old grandson. There were maybe 50 people at a lovely park and we were going to grill and everybody brought some salads or sweets so it was a big community picnic party! Well, he wanted to eat...right the moment we arrived, while things were not ready and not all guest had come. So I had to get him something fixed that moment as he was screaming at me with all those people around....like a three year old. I wanted to.....well I won't say.

Then he stopped the treatment in 6 months because his blood counts were so low he could not continue. The Hep C was not gone. In one year, he was strong again and continued with his mostly normal life. My nice, kind, helpful, fun man was back in town!!!! (I only wish he had stopped using alcohol at that point, as he continued to get sicker and the beer etc did not help.)

By 2009 he was very sick again...VERY. This time he was not on treatment but he had Hepatic Encephalopathy. His ammonia levels were very high and the screaming started again. He was horrible to me, to the children, to everyone. And very ill. And very confused. He had every symptom of end stage liver disease...stage 4...terrible...bleeding, and edema in feet and legs, sleeplessness, fatigue, nausea, no eating, etc.

In 2011 he had a liver transplant. The next day my wonderful Mike returned. Sure he was just over a HUGE operation, but he was not mean. He was the one crying that he was so glad to be alive and I took such good care of him and no one had a better partner, more wonderful children, etc.

AND...he has no memory of making anyone cry. If we tell him of this bad behavior, he thinks we are making it up. So may family and friends came to see us in Florida, from Germany, and New York, and California and Utah, etc....to say good bye to him....

Well, he did not die, and he does not remember that the people came from thousands of miles to be with him in his last days.

So, my recommendation is to talk to a counselor, maybe get some anti-depression medicines for him...they are given routinely in the US with treatment. And maybe some for you as you are totally FED UP.

And then you need to think of yourself as a hospital nurse: "I see Husband, it is time to take your ____________." "I see, Husband, you are getting tired, time for your nap." "I see you are not so well this morning, Husband, perhaps a poached egg and some tea would be good."

You will need to get stronger. He doesn't mean it. It may get worse. BUT, if this treatment WORKS, he will be cured of Hep C and maybe he can return to a normal life. Remember, this treatment is like a chemo for a cancer...and it can have bad side effects...the worst for YOU is his mental status. Maybe the worse thing for him is .... I wonder what?

I am so sorry this is happening.

Feel free to post often.

Stay strong...he doesn't mean it. He isn't drinking alcohol is he????

MamaLama from Florida

Thank you for all of your suggestions.  I have been ready to throw up my hands and quit.  MamaLama, I can see my husband doing the same things.  It is so frustrating.  I slept in my car, in my garage, Sat. night just to have some peace.  He woke me up at 1am turning every light on in the house and wanting to know what I was doing.  He was ranting and raving.  It was pretty cold, but the quiet was worth it.  He has never had a drinking problem.  He may drink a 6 pack of beer in a year.  We really dont know how or when he got hep c.  My grown children dont come around much and I really dont want my grandchildren to see "Grandpa" behaving this way. I'm going to have to learn how to juggle working full time and being a caretaker.  I have no one to help me.  I will look for the caretaker thread.  Thanks, it helps to have someone that understands and just listen.

Is he seeing a hepatologist? Most docs, even GIs don't have the knowledge to handle Hep C properly. It sounds as if he has Hepatic Encephalopathy and needs to be taking lactulose along with xifaxin. As somebody already said, he may need meds for his moodiness and anger. I dealt with HE for 4 years, but never had an anger problem. In my case,I felt stupid and slow, but the lactulose and xifaxin helped immensely. Again get him to a hepatologist asap.

             indianawife hi,   i did the triple therapy with incivek.  i am also dxed with hep c , genotype 1 and late stage 3 fibrosis.  it was the 2nd week of tx for me that the side effects kicked in.  the physical sides i expected, but the mental ones were problematic. the tx dr referred me to a psychiatrist.  he rxed an AD that was appropiate for my sx and that was liver friendly.  it took 16 days to kick in, and i felt calm.  dual therapy or triple, will leave you quite grumpy (to be nice).  everything was iritating.  the smell of food cooking, the volume of the t.v. 

           you are going to start victrellis at the start of the 5th week.  if you dont have an upcoming appt soon, i would email my tx dr about help with your sides.  my dr gave me an rx for ativan, to be used as needed.

          after 4 weeks my v/l plumeted from 21 million copies of virus to undetectable by blood test.  my energy picked up a little, once the virus was gone.  the treatment is doable.  get out of the house and get exercise

it helps.                best      barry

Indianawife, do you have close neighbors or friends who would be willing to check in on your husband a couple of times a day? How about adult children? I don't think that you can comfortably leave him alone at this point. Have you taken his car keys? If you need to have the doctor order that, so be it. You need to know that he is safe while you work.

Hugs,
Connie