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Help for Hepatic Encephalopathy
Hello, about 2 months ago I finished triple therapy. I am UND and feeling pretty good. That being said I thought that since I was UND I no longer needed the Lactulose. Wrong! While I am UND hoping to be heading to SVR I realize that I need to take the Lactulose for now until my liver can filter toxins a little better than it is doing right now.
My question is, are there are other things I can do in addition to the lactulose? Would a high fiber diet help?...or is it only the lactulose that removes the ammonia? I appreciate any advice. I see the doctor on May 1st and will also talk to him. I was hoping to get help for now
Thank you
Dee
My question is, are there are other things I can do in addition to the lactulose? Would a high fiber diet help?...or is it only the lactulose that removes the ammonia? I appreciate any advice. I see the doctor on May 1st and will also talk to him. I was hoping to get help for now
Thank you
Dee
Good luck Dee, Is your doctor doing regular screening for HCC. Being und at week 8 post tx is a really good sign that you will be SVR.
Best,
cando
Best,
cando
Hi my platelets were the first thing that alerted my doctor to the fact I had Hep C. Right after I finished treating my platelets were higher than they had been in years. 165 vs 75 so I was really happy. I had also stopped taking ibuprofen like it was safe.
My biopsy showed "wisps of collagen which suggested possible transition to cirrhosis" so I was graded a 4 for cirrhosis even though my original Hepatologist felt I should have been graded a 3. They took a very small piece of my liver if I remember correctly it was .5 X.5X.1 which I have since learned isn't enough. My doctor told me it would be very hard for me to treat. He said that since I had relapsed from the first tx I would be response guided and if UND at 4 and 12 weeks would do 24 weeks. He said any more than that could do damage and not help. I did read the instructions for relapser and it did say 24 weeks with a line that said "Those with cirrhosis may benefit from additional 24 weeks" since he worked on the 3rd trials with VX950 I did what he advised me to do. I was still UND at 8 weeks and will be tested again at 3 months then 6. Thank you for writing
I really appreciate it.
My biopsy showed "wisps of collagen which suggested possible transition to cirrhosis" so I was graded a 4 for cirrhosis even though my original Hepatologist felt I should have been graded a 3. They took a very small piece of my liver if I remember correctly it was .5 X.5X.1 which I have since learned isn't enough. My doctor told me it would be very hard for me to treat. He said that since I had relapsed from the first tx I would be response guided and if UND at 4 and 12 weeks would do 24 weeks. He said any more than that could do damage and not help. I did read the instructions for relapser and it did say 24 weeks with a line that said "Those with cirrhosis may benefit from additional 24 weeks" since he worked on the 3rd trials with VX950 I did what he advised me to do. I was still UND at 8 weeks and will be tested again at 3 months then 6. Thank you for writing
I really appreciate it.
Hi Dee,
Don't feel dumb, all of us are learning a lot as we go through the tx and interact on this forum. It had surprised me to read that you were taking lactulose, and I started reading more because of it. As a result I've just learned a lot more about HE and have realized that I've had (and downplayed) a couple of early signs of it myself. I don't want to hijack this thread with those details, but just wanted to point out that all of us have imperfect knowledge - even the top researchers don't understand everything about the disease, and the rest of us are at least initially dependent on our imperfect doctors and their even less-perfect ability to communicate. This forum is miraculous in its ability to educate us all. I'm really grateful to you for your posts on this subject, as they have caused me to learn a lot more. Thank you!
-Saelon
Don't feel dumb, all of us are learning a lot as we go through the tx and interact on this forum. It had surprised me to read that you were taking lactulose, and I started reading more because of it. As a result I've just learned a lot more about HE and have realized that I've had (and downplayed) a couple of early signs of it myself. I don't want to hijack this thread with those details, but just wanted to point out that all of us have imperfect knowledge - even the top researchers don't understand everything about the disease, and the rest of us are at least initially dependent on our imperfect doctors and their even less-perfect ability to communicate. This forum is miraculous in its ability to educate us all. I'm really grateful to you for your posts on this subject, as they have caused me to learn a lot more. Thank you!
-Saelon
Hector taking lactulose doesn't always mean someone has HE.
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Why is this medication prescribed?
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Lactulose is a synthetic sugar used to treat constipation. It is broken down in the colon into products that pull water out from the body and into the colon. This water softens stools. Lactulose is also used to reduce the amount of ammonia in the blood of patients with liver disease. It works by drawing ammonia from the blood into the colon where it is removed from the body.
.
Why is this medication prescribed?
.
Lactulose is a synthetic sugar used to treat constipation. It is broken down in the colon into products that pull water out from the body and into the colon. This water softens stools. Lactulose is also used to reduce the amount of ammonia in the blood of patients with liver disease. It works by drawing ammonia from the blood into the colon where it is removed from the body.
Dee does your Bx show cirrhosis? The reason i ask is you have normal platelets and your doctor didn't treat you as being cirrhotic... Confused here.:)
Still thinking about this and dumb I feel to think that all I had to do was get to UND and all would be well. I was not educated enough about cirrhosis to know that I still have cirrhosis and I still have to keep fighting to live, to keep my mind etc. If it were not for Hector and Hawk I still would not know. I am beyond upset. I wonder now if this is why I had so much trouble on the tx. I did get to a point right after the Incivek where I could not comprehend what I was reading and I could not write a letter, this went on for about 2 weeks.
I appreciate everyone on here so very much, even if I do not name you I am thankful for all of you
I appreciate everyone on here so very much, even if I do not name you I am thankful for all of you
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I didn't releaze you had advanced cirrhosis? Glad you are UND and looking good for SVR.
The only two drugs that treat Hepatic Encephalopathy (HE), Lactulose (or Kristalose) and Xifaxan (Rifaxamin) 550-mg 2x a day. Talk to your doctor about Xifaxan. It is very expensive. About $1,500 per month so hopefully you have good insurance.
Since you have cirrhosis it could take a long time before your still living liver cells (not the scar tissue) can regenerate again. Your doctor should have explained this to you. If you are seeing a gastroenterologist you should be seeing a hepatologist at a transplant center as they are much more knowledgeable and experienced in matters having to do with cirrhosis.
Here is the link to Xifaxan. Check out their $100 co-pay discount card too.
http://www.xifaxan550.com/
Without Xifaxan I don't know what I would do. Amazing stuff!
Good luck!
Cheers!
Hector