Brain "Fog"

My husband was diagnosed in December, 2010. He was apparently infected 32 years ago as a result of blood transfusions.  He has type 1a stage 4 cirrhosis.  It has been a tough year. He was hospitalized twice for hepatic encephalopathy. He has had varices banded and after a million tests is now on a liver transplant list. He has a Meld score of 17 so it will be a while.  He started triple therapy in late Sept. and is now in his 5th week. The side effects started off easy but have progressed. Serious fatigue  and brain fog have been the constant side effects. No rash thank goodness as yet.  Vomiting started a week and a half ago but the doctor gave him a prescription for the nausea and it has stopped.  Because of his hospitalizations for hepatic encephalopathy, I am seriously concerned about this brain fog. He has not gone out in weeks except for a doctor's visit last week. We are waiting for the blood work results which should take a few more days. Does anyone have any advice on what we can do to alleviate these symptoms of confusion. He is taking lactulose since December several times a day.  I find this brain fog to be the scariest of all the symptoms. He almost quit treatment twice already  because of ti. Insomnia is also a problem at times which keeps us up alot.  Happy I found this forum for support. Thank you for "listening". It's been halping reading your posts.

[halbev]

I am 1a stage 3 and treated with Incevik went UND at 4 weeks now at 16 weeks and all is good.
You I think would like to know that the fog goes away after the Incevik finishes, it is no fun just be strong and get through it, the fatigue also lessons. The Insomnia is a side effect of Ribavirin so it will be there throughout treatment, But you can lesson it some by taking the Riba earlier in the evening before you go to bed it helps some, at least you will sleep 3/4 hrs rather then a 1hr or two.
Also Incevik seems to get worse as far as fatigue until it is done, you would think the sides would be less the longer you are on it, does not seem to be so with Incevik. My worst weeks were 11/12 seemed to not let up until I finished.
3 weeks post Incevik and I feel much better, still fatigued but not as bad some days I make it all day and no nap getting batter everyday, all I wanted to do was sleep.
Best wishes and be strong it just may be the ticket for you, it is not easy and I see a lot of people complaining about little things just do what you must, I think the alternative would be much worse, we all know the outcome of that.

[HectorSF]

The brain fog from treatment is not related to hepatic encephalopathy. They are two completely different things. In time you will come to understand the difference of behavior. Brain fog is more of poor/dulled concentration or memory. But unlike the poor concentration or memory
of HE it is not anywhere near as profound and dangerous, it doesn't have the disorientation that is also associated with HE. While memory is not as sharp with brain fog... you still know where and who you are, you don't slur your speech, or walk like your drunk or go into a stupor then a coma. It is harmless and disappears when treatment ends.

Brain fog from treatment is from the side effects of the meds. There is nothing that can be done about it. Many patients undergoing treatment suffer from it to one degree or another but I have never heard of anyone stopping treatment because of it. If a person has side effects from treatment brain fog is a minor system compared to most side effects like anemia, rash, extreme fatigue, hair thinning etc. These are all common side effects of treatment and at best can only be minimized and managed. Treatment can be tough. I am sure you were warned that it could be very difficult and for 48 weeks, that is no easy tasks even for persons with healthy livers. Your husband it one brave and tough guy.

He should be having his ammonia levels tested more often then usual now that he is on treatment. Treatment can affect the liver so you don't want it to make things worse. Just to make sure that his HE is still being managed by his lactulose. As long as he has 3-4 bowel movements a day he should be fine. Remember ammonia levels do not always correspond to the degree of HE. So it is really his behavior that you should continue to keep an eye on.

Insomnia and day and night reversal is a sign of HE so it is good to be cautious.

Your husband might look into taking Rifaximin. Has his doctor mentioned this? In many people it controls HE without all the nasty side effects of lactulose and can be used in combination with lactulose.

Since his MELD is 17 and he has End-Stage Liver Disease he is very lucky to get a chance to treat. Not many doctors would treat someone this ill. So he must be going to a good transplant center in NYC. That is great news.

What is more important in my opinion is his platelet count, anemia, and other manifestations of the powerful meds on the liver. If his platelet count gets too low or his anemia becomes uncontrollable he could have his treatment stopped.

Your husband is a brave man for treating while he is so ill. I wish you both the best of luck and hope your husband gets a transplants sooner rather than later.

Hector

[nan535]

Thank you for your response.  It was very helpful.  My husband was on Xifaxin (Rifaximin) for 5 months but unfortunately had to stop it when the itching and swelling of his legs and feet became too much to tolerate.  He has an allergy to it. He does have anemia and we are waiting to get this 4 week blood results to see if his blood count is lower now. His primary doctor is a heptologist who referred him to the transplant center and it is he who is treating him.  Other than his diseased liver, he was a healthy guy. Yes he is brave.  I knew he was strong but I never knew how strong until now. I worry constantly whether its HE or not. It is very hard on me because I am the one who is making sure he is taking his meds correctly.  I wonder if I am making him worse...Hopefully these blood results will answer some of those nagging questions.

[nan535]

Going through this with my husband, I know how hard it is. I am very happy for your great results. Your response was encouraging and I appreciate it very much. I wish you the best in your recovery from this virus.

[starshine1ca]

Though I have no advice to offer you, I just have to say that you are an amazing care-giver and your husband is truly so very strong. I will pray for him daily.  Hector's response was so informative and I also want to say thank you to Hector for all those important facts as I too am stage 4, stage 4 cirrhosis.  Wishing you success with this new treatment!  

[nan535]

Thank you for your kind words of support.  This is tough but the rewards are great.  I would recommend that anyone who is still in the early stages of their liver disease not even think twice about doing it.  It only gets worse later on. Unfortunately, my husband didn't find out about his Hep C until it was in the advanced stages.

[lapis]

Unfortunately, my husband didn't find out about his Hep C until it was in the advanced stages

And this is what happens to so many people.  This is why we must get the word out about this disease!!!

Your devotion to your husband touched me deeply.  I don't have experience with cirrhosis and tx so nothing to offer there, but just want to add another voice of support for you and your husband.

Wishing you the best,
Lapis

[nan535]

Thank you for your kind words of support.  This is so much harder than we ever anticipated.  We got a call today from his doctor that his kidneys may be effected and he needs to redo the blood test. He said if so,he may need to stop the tx. Five weeks of hell only to get this news.  It's 1:45 am and we're up again... Sorry for the down post.

[nan535]

Sadly, I have to report that my husband had to stop treatment after completing 5 weeks of the triple treatment (including Incivik). The "brain fog" I thought he had  ended up putting him in the hospital for 4 days. His diagnosis is Portal-Systemic Encephalopathy. Though he is home now  and off the meds for 5 days he is not even close to being who he was before he started the treatment.  I only hope this is not a permanent condition.
Based on his experience, I would strongly recommend that someone who has cirrhosis who has had any bouts of hepatic encephalopathy, think very carefully before starting this very strong treatment. It is extremely difficult and very hard to tolerate. As you see, my husband gave it his best shot but now had to stop because of the damage it was doing.
The final "kick in the teeth" - his 4 week blood screen for Hep C came back negative (<43).