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taken off pegasys/ribaviran

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Posted 5/20/2013 4:28 PM (GMT 0)
We went to hep Dr Fri.  Mr was so confused, Dr suggested psychiatric therapy and also to stop treatment.  Mr was not making any sense at all.  Went to emergency psyciatric hospital, after 7 hrs, was told he is ok. just a little memory problem.. The hospital was supposed to check him for alzhiemers too.  He had a ct scan on his brain.  Didnt get the results.   I had to show him the bathroom several times while waiting and also how to get outside to smoke.  I had to explain what a buffet was and it was alright to go back for seconds.  He is not ok.  Dr called and made appointment for tomorrow instead of Fri.  Dont know what to expect or if there is any other type of treatment for hep c .  dont know how much longer either one of us can take this. My son moved yesterday in with his brother. Mr is so mean and says horrible things that a father shouldnt say to his son.  I also was afraid that in Mr's anger issues and confusion, he might hurt him.  HELP!!
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Posted 5/20/2013 4:55 PM (GMT 0)
Good Morning IW,

There are two things at work here.

Liver Disease and
Hep C Treatment

Both have bad mental/nervous symptoms.

Both are worse if the person has underlying psych problems. My Mike is prone to snarky episodes though he is 95% a nice guy normally, so when he was on treatment and when he was in End Stage for the liver disease, he was a horrible grump! He was also obnoxious when drinking before all this started! They gave him Effexor, but that didn't help much, or was at too low a dose.

But, the good news is that when he got off the Hep C treatment (Ribavarin and Interferon) he gradually got better...mental health wise, not liver wise as he did not complete the treatment and thus never cleaned the virus.

He was good mentally for another 7 years!!!! Just the 5% grumps and the bad attitude when he drank too much.

When the Hep C got bad, his mental status failed again. That time was different though. He was argumentative and mean but more confused a lot of the time. Lost things, blamed me for hiding them. Screamed at me. One time he told a 5 year old grandchild that there was no Santa and she should stop fooling herself. How awful is that??? He can't to this day figure out why he would have said such a thing. This time it was Hepatic Encephalopathy and they medicate for that with Lactulose and Xifaxan. He was almost bearable when he was on the Xifaxan! At one point his insurer didn't want to cover it and I was all over them about it, wrote letters, called my congressman, etc. He got the meds!

And get this he has amnesia about both years....he can't recall doing any of the stuff we tell him about. He had me in tears daily...until I joined this forum and realized I was one of a zillion others facing the same situation. I got stronger just posting!

After transplant he is his normal 95% nice self. He has his days...mostly if he doesn't feel well or if he is frightened that he is getting sick again. He still has Hep C and is hoping to take a non interferon based treatment before he is End Stage again.

I'm so sorry this is going on. And I know that

1. he is a really sick dude right now
2. and you and your son are in a bad place

Hugs,

MamaLama aka Carol from Florida
Posted 5/20/2013 5:29 PM (GMT 0)
IW, was your hubby confused before taking treatment? Did he have mental problems? If not, I suspect that treatment is the culprit. See how he does off of treatment. As ML/Carol indicated, it can also be elevated ammonia, which goes to the brain and causes symptoms she described...terrible confusion, nasty behavior, etc.

I don't think much of a doctor who sends him to a psychiatrist. Neither seem to know much about liver disease. However, maybe they are ruling out psychiatric problems and also the shrink can prescribe appropriate meds which may help. The treatment for hepatic encephalopathy (HE), though, is Lactulose and sometimes Xifaxan as well.

Get him to the best liver doctor you can find at a medical center or transplant center. I know you said there are none near you, but it's worth the travel to get him the correct care.

Hugs,
Connie
Posted 5/20/2013 5:30 PM (GMT 0)
Is he taking lactulose? It sounds as if he could have HE, on top of the treatment problems.
Posted 5/20/2013 7:18 PM (GMT 0)
His amonia levels were ok.  He had a little confusion before but nothing close to this.  His Dr. is supposed to be the best in the Louisville ky area.  I did research on him before ever going to him.  I also know someone who went to him years ago.  He has been in practice 30 plus years.  I was really upset that mr was taken of meds immediately.  It wasnt actually the Dr., it was an assistant.  We go back tomorrow. I called and made sure the dr had the hospital visit results.  I was also told the new treatment not using pegasys or ribaviran will be available in Oct 2013.  Maybe that will be an option.  I have read some very good things about that.

Thank You all.

Posted 5/20/2013 7:45 PM (GMT 0)
IW....you and I are on the same page...bring on the non interferon/ribavirin treatment program!!!!!

Keep up your spirits SOMEHOW.

Hugs,

Carol
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