Loss of Memory, Possible Dementia after HEP C treatment

[RickGuillory]

So, I am freaking out.  I've found out I had Hep C over 27 years ago.  Back then they didn't know about Hep C, just that I had something.  

I did my first interferon treatment about 23 years ago when they decided that there was a Hep C and I tested positive for it.

My first treatment was just interferon.  Nothing more.  It didn't work.  Just made me sick as a dog.

Years later, I went back to see if there was a cure.  I was at stage 2 cirrhosis.  They wanted to try  a new combo drug therapy.  This was pegylated interferon and ribavirin.  I did this for a while with no positive results.

A few years later, there was a third "experimental" drug added to the Pegylated interferon, ribo.  I can't remember the name.  Only that the side affects were so bad I thought I might die.  It didn't work either.

I had just finished that study when they came out with the new drug,  Sovaldi.  I did the pegylated interferon, ribavirin and Sovaldi for 12 weeks. Finally cured.  At stage 4 cirrhosis.

Now, I am experience severe memory loss.  6 months ago, it took me an hour to remember both my dogs names.  Last week, I was asked where I went to college and I couldn't remember.  Recently I was trying to remember the names of the guys that I work with.  There is only nine of us.  I couldn't remember 4 of them.  I've worked with them for almost 15 years.

This is just a few of the examples.  I finally went to see my PCP.  He thinks it is caused by stress.  I am not that stressed out.

I have to see my Hepatologist every 3 months for an MRI and results.  They are monitoring for cancer.  I will see him this coming Wednesday and plan to ask him about my "getting very serious" memory loss.

Did I trade Hep C for Dementia?

I had posted something on Facebook this week about my loss of memory.  Someone I worked with over 5 years ago read my post and sent me a text message.  He knew/remembered that I was going through the Hep C treatments.  He mentioned that his good friend also went through these treatments and is now experiencing the same issues that I stated I was having.

Are others experiencing these issues?  What are you doing about it?  Is there a study regarding this topic?  Can I get in on the study?

[flyinlynn]

How long ago were you diagnosed with cirrhosis?

[flyinlynn]

Your treatment history and history of cirrhosis are almost exactly like mine. I also had interferon monotherapy in I think 1995, then 6 months of interferon plus ribavirin, no response. Later interferon ribavirin and an experimental drug. Again no response my viral load did not decrease at all.

I treated with Sovaldi and Olysio for 12 weeks but relapsed 12 weeks after treatment ended. After Harvoni was approved I treated with Harvoni for 24 weeks along with ribavirin for 15 of those weeks. That one worked and I am now 2.5 years cured.

I also was having liver biopsies every 5 years and went from F1 to F2 to F3 fibrosis and finally in January 2008 F4 cirrhosis.

I see my hepatologist every year and have blood testing and abdominal ultrasound every 6 months.

Have you discussed this symptom with tour hepatologist? I think it is urgent you do so. I hope I am wrong but are you familiar with HE (hepatic encephalopathy)?

HE is one of the possible symptoms of ESLD. Have you had upper endoscopies to check for esophageal varicies? That is another symptom of Advanced liver disease. I had varicies Thad were bad enough they needed to be banded to prevent a possible dangerous bleeding event. Another symptom could be retaining a lot of fluid. Swelling of lower legs called edema or more seriously retaining significant amounts of fluid in the abdomen called ascites.

From what I have read after we are cured the likelihood of our liver disease progressing is greatly reduced as long as we don’t further harm our livers. We remain at increased risk for liver cancer HCC but that risk is also reduced.

So it is less likely you have developed HE but I would still discuss this with your hepatologist. Is your doctor associated with a liver transplant center? For those of us with advanced liver disease it is best we are followed by a doctor who is working with a transplant center as they are best equipped to follow patients like us.

Do you know tour MELD score? Do you have any of the other symptoms of Advanced liver disease (ascities edema, esophageal varicies, low platelet count)?

Here is a list of symptoms if HE does this sound like what you are experiencing?

“HE encompasses a range of symptoms depending on the severity of the condition, so symptoms can vary widely from one person to another. Symptoms may begin slowly and gradually get worse, or they may occur suddenly and be severe from the start.

Mild to moderate symptoms of HE may include the following mental and physical changes:

Mental
Mild confusion
Short attention span
Forgetfulness
Mood swings
Personality changes
Inappropriate behavior
Difficulty doing basic math

Physical
Change in sleep patterns (like sleeping during the day and staying up at night)
Difficulty writing or doing other small hand movements
Breath that smells musty or sweet
Slurred speech

More severe symptoms of HE may include these mental and physical changes:

Mental
Marked confusion
Severe anxiety or fearfulness
Disorientation regarding time and place
Inability to perform mental tasks such as doing basic math

Physical
Extreme sleepiness
Slowed or sluggish movement
Shaking of hands or arms (called “flapping”)
Jumbled, slurred speech that can’t be understood”

Wishing you the best of luck with this and again I sincerely hope it is not HE that you are experiencing.