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.
Without Xifaxan I don't know what I would do. Amazing stuff!
Talk about silent suffering - Dee you kept that one to yourself and that is like you. You continue to amaze me. Your selfless nature is one I long to emulate. You are a rock with jelly inside. I won't tell. I am just really proud to know you.
Thank you both so very very much. I really appreciate both of your answers so very much
I was feeling really good and then I had 3 dental appointments in a week, two of them with lots of numbing shots, root canal, etc. I do not think my liver is very happy with me right now as it has enough to do without that stuff.
Yes Hector I need to find a better doctor, thought I had one but now I know better so will do better.
Thank you so much for the reply
Dee, you deserve the best, so please see a hepatologist who is knowledgeable and experienced in treating cirrhotic patients. They may have have some insight into liver improvement post successful HCV treatment and what you can except.
You have done the work. Now it is up to your liver to do what it can to heal itself after so many years/decades of damage caused by HCV.
Ask about Xifaxan. It has really worked wonders for a lot of us with HE. Though I still have my flare ups. Things are much better than on Latulose alone.
I've been having some moderate HE in the last week or two. Insomnia is driving me nuts. Only got 2 1/2 hours of sleep last night and I am a little wacky lately (some would say more than a little!) and my thinking is all foggy and memory is poor these days. But like you said, over all I am feeling good. As good as it gets with ESLD and liver cancer.
Best to you!
dee, i just want to tell you what a strong woman you are! you amaze me. i wish you all the best with getting a better doctor. best wishes. belle
Sorry to hear your having a difficulty! Praying it gets worked out ASAP!
Thank you all so much for your responses, this forum continues to amaze me with all of the nice people on here. I really appreciate it.
I was able to call the doctor to get additional lactulose and seeing him on the 1st, will ask more questions and try to find a good Hep, thought I had one.
Thank you again, until your post I did not realize I had advanced cirrhosis either. I have been on a low dose of lactulose, just thought I needed additional help.
Thank you for taking the time to write. I thought I was done with the fight, evidently I am not so am in a little bit of shock here
I have been thinking about this doing more research and see where I went wrong, it was a case of apples and oranges. I thought that when I got to UND and felt so much better that it was over.
With cirrhosis it is not over. I have to be vigilant make sure I am cognizant of what I am taking and how it will affect my liver and also take the lactulose. I hope that my liver will get better over time. I am sorry I used a post for my own stupidity and/or denial regarding the cirrhosis.
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
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.:)
Hector taking lactulose doesn't always mean someone has HE.
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.
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!
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.
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.
I am confused too on what your biopsy reads. It is interesting that your doctor called it transition to cirrhosis yet you need the laculose to keep down the ammonia. It does sound like you are at the beginning of a lot of research. Any plans for a biopsy since the last one had too small of a sample.
The good news is it looks like you have wiped out the hep C with 24 weeks. You can't ask for better than that. I sure would want to pin a doctor down on prognosis and what you need to do to stay healthy.
Please take care
I'm glad you are UND at 8 weeks, post Tx, Dee. You weren't being stupid or in denial. It was up to your Doctor to explain to you, about this stuff~ make another appt, and get some answers though, and keep taking your lactulose.
This whole journey is a learning experience. You are such a kind and compassionate person, and I'm glad I met you, on this Forum <3
Yes, after I relapsed from the first tx and before I started second tx I was being checked every 6 months, blood work, looking for HCC, ultrasound, then when VX950 was approved I asked to go on it. He said it would be very difficult for me, it was
He said it would either work or not, he was not putting my body through any additional tx over the recommended 24 weeks for relapsers. I hope it worked. I was UND at 8 weeks. Unfortunately if I were to relapse I would know right away as I have/had cryoglobulinemia, when I relapsed first time I had a rash all over.
Thank you both for your posts. Yes, I am seeing the liver doctor today and am going to go to see a Hepatologist in DC. I need to get a referal for DC Hepa Doc
There used to be a doctor who came on her who said the following, I found this and since my ammonia was elevated and I was having slight symptoms. I thought it would be a good idea, my doctor agreed however he did not bring it up, I did. I was started on a low dose 2 tablespoons a day, started taking 4 last week
Jan 05, 2007
If you take lactulose prophylactically, then the ammonia producing bacteria will be kept at a low level and the lactulose dose to achieve this will be low, with no unpleasant degree of diarrhea. If a patient has already toxic CNS symptoms, the presribed dose of course will be high and diarrhea will be intense. Again, hepatic encephalopathy can be life threatening and then even lactulose enemas are given to save the patient.
Because of this almost miraculous effect of lactulose, it seemingly is respectfully considered a "drug" here - and by some doctors-, something to be reserved for severely ill patients.
In reality it is a harmless sugar, simply fostering a nontoxic enteric flora that lives on lactulose that we cannot absorb, reducing not just ammonia but also LPS and endotoxins reaching the liver from the gut, reducing hepatic and overall inflammation, having antifibrotic effects for that reason and preventing "bacterial translocation" that is the transport of bacteria from the gut lumen through "leaks' in the guts epithelial lining into the intstinal tissue towards local lymphnodes and the liver. It preserves the integrity of the intestinal mucosa, which further reduces the antigen induced stress on the liver, calming the Kupfer cells, which are sitting there to catch these foreign intrusions that all hit the liver first.
It is therefore, together with some probiotic bacteria, part of any reasonable probiotic/eubiotic treatment plan of the intestinal flora, with great importance to anyone with liver disease and and eye towards reducing hepatic and systemic inflammation, fibrosis progression /regression.
It is something that, in low dose, even a "healthy" person should consider as part of his/her lifestyle.
Here is a study to determine its "toxicity":
Lactulose has profound health benefits by way of increasing bifidobacterial flora in the intestine of infants thereby protecting them against enteric infection, constipation and systemic encephalopathy. In the present study to assess the sub chronic toxicity of lactulose syrup, the rats were fed on a basal feed supplemented with lactulose syrup at 0.5, 1.0, 2.0 and 5.0% for a period of 21 weeks. Monitoring of food consumption, gain in body weight and physical observations did not reveal any treatment-related toxicity in any of the group of rats. Terminal autopsy also did not reveal any signs of toxicity. Further, no significant alterations in relative organ weight, serum biochemistry and urinalysis were observed up to 1% lactulose supplementation level. The results suggest that supplementation of lactulose in the diet does not produce any toxicity at the doses tested.
Well the brain fog continues, my appt with doc yesterday was made for another office which I have never been to. Not sure what the receptionist was thinking. I am not sure what I am thinking :) Now my appt is next week.
Have a great day!
I found this article which helped me very much, maybe it will help someone else. It talks about mild hepatic encephalopathy
I missed ur post at first. They started me on lactulose this week. I hope u get more info n keep posting. I was scared when they ordered it and have not started It yet. Your post is such a comfort. Your labs have been good since ending tx. We're gonna get there girl.. Karen :)
Hi Karen, I just saw this, as is the norm for me I am a day late, dollar short.
Thanks so much for the reply. I am still slightly confused though my doctor said my blood looks so good he does not think I even need the lactulose. Not sure if I agree or not. He said he thinks I am just very sensitive to anything out of the norm. We'll see I am waiting for my 6 month check, then I will see how things are.