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851432 tn?1239036447

Cirrhosis and Xifaxan

I just saw a new Hepatologist who suggested that I am most likely already in Stage 4, based solely on my platelet count.  My last biopsy in 2006 showed Grade 3, stage 3.  He has scheduled other tests, but in the meantime, be prescribed Xifaxan to control ammonia levels.

Has anyone taken this drug, and if so, for how long?  I understand that the FDA has only recently approved it for this use.  SInce it is classified as an antibiotic, I don't understand how it can be used long term without harmful side effects.

I'm sacred and freaking out a little bit about the cirrhosis diagnosis, and wonder if there's anything I should be doing differently with diet and supplements.  I relapsed in 2009 after TX'ing for 66 weeks.  Am currently waiting for a trial for relapsers with one of the PI's.  Any help any of you could offer in the meantime would be greatly appreciated.
Best Answer
446474 tn?1446347682
Hi. Thanks for the update. (My HE is not under control at the moment so I'm sorry for any "bloopers" that might occur in the text below).

It appears you are educated of HCV and liver disease which is a good thing. Glad you got all your shots and are taking care of yourself!

As far as the sonogram, it really takes an expert to interpret a sonogram. Your doctor will receive a report indicating what they found. If you have cirrhosis your liver will be smaller than normal and nodular. An abdomen scan will also detect if your spleen is enlarged (splenomegaly). It is this change of the spleen that lowers platelet count in cirrhotics. They can also see if you have an ascites. The accumulation of fluid in the abdomen. They will be able to see the portal vein. Portal vein flow is related to esophageal varices. Your upcoming endoscopy (EGD) (camera inserted down the throat past the stomach) is used to confirm varices and the degree of varices.

Your platelets are low. Norm being 150,000-400,000. In my case, my platelet count was the first indication that I had cirrhosis. I then had a biopsy which confirmed cirrhosis. The endoscopy EGD confirmed varices and I have been taking Nadolol (which reduces portal blood pressure) ever since. Even though my blood tests were within norms at the time. This was 3 years ago. Now very many of tests related to liver function are outside of normal ranges.

Your question -
"Is your doctor going to have you stay on the Xifaxan long term along with the Lactulose, or are you taking it for just a month on then off for awhile?"
Yes. The combination is the best way to manage HE currently. My liver is starting to decompensate and hepatic encephalopathy (HE) is one of the symptoms I will have to manage until I can stop the progression of my liver disease. I am counting on Telaprevir if I don't decompensate further otherwise I will need a liver transplant.  

You asked about transplants.
As you probably know, because of the shortage of cadaver livers a person needs to be close to death in order to receive a new liver. As I live in San Francisco, this is particularly true and a patient requires a rather high MELD score to receive a new liver. Of course there are exceptions, such as liver cancer and if you have a living donor. Of course no one can tell how long I have until my liver fails. It could be years. I just hope that I can stabilize again. Meanwhile I take all of the standard meds to manage my symptoms.

Best of luck with your tests! Remember that even if you have cirrhosis you can stay compensated for many years.
Let me know what you find out from your doctor and I will help you in any way I can.

Thank you for your kind words and support.

Cheers!

HectorSf
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851432 tn?1239036447
Hector, thank you so much for all of the information.  The only symptoms I have of encephalopathy are the reversal of day/night cycle, fatigue, cloudy thinking and inability to focus my mind for extended periods.  Th doctor scheduled me for an EGD, but I haven't had it yet, so I don't know about the varices.  My platelet count was 73,000 the last time I was tested.

The doctor didn't mention Lactulose to me, but I have since learned of it through my own reading.    Is your doctor going to have you stay on the Xifaxan long term along with the Lactulose, or are you taking it for just a month on then off for awhile?

BTW, I have had those vaccinations, and am careful about the drugs I take, as well as my diet.  Hopefully, once I get the results of the rest of the tests ordered, I will know more about what shape my liver is really in.  Looking at my liver during the abdominal sonogram yesterday, it didn't look like a liver with advanced cirrhosis, but I'm certainly no expert.  I'll have to see what the doctor says.

I'm so sorry that you are showing signs of decompensation.  Does this mean that you are a candidate for a transplant now?  I really wish you all the best in staying as healthy and positive as you can.  Thank you again for all of your help!
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446474 tn?1446347682
Hello. I hope you find something useful here.

I have been taking Xifaxan for about a month now in addition to Lactulose. I have experience no side effects, while Lactulose, the 1st line of treatment for HE does at times upsets my stomach. Antibiotics have been a common treatment for HE. This is nothing new.  Only the drug itself is new. Antibiotics work by blocking the production of the toxic compounds by the bacteria in the colon.

Have you been experiencing symptoms of HE (hepatic encephalopathy)? HE in my experience is a symptom of advanced cirrhosis and you will probably experience other symptoms of advanced cirrhosis also. The diagnosis of hepatic encephalopathy is based on clinical examination demonstrating decreased attention, altered personality, and reversal of day/night cycle, and on physical examination (eg, asterixis) flapping hands when positioned in a "stop" position. Although "minimal HE" (mHE) is difficult to clinically diagnose. The optimal diagnostic tests for mHE remain to be defined but several computerized tests appear to be easy to administer and accurate in the diagnosis of mHE. Short-term treatment of mHE with lactulose or yogurt (12 ounces of yogurt (with live bacteria) per day) can improve cognitive function and quality of life. Unfortunately, at the present time, there is no reliable and rapid test for practicing clinicians to diagnose mHE.

Antibiotics, particularly nonabsorbable antibiotics such as neomycin 1000 mg twice daily, are currently the recommended second-line treatment for hepatic encephalopathy.Lactulose is the 1st line of treatment. A prescription liquid laxative that binds with ammonia and removes it from the body. Are you taking Lactulose? Rifaximin 400 mg 3 times daily is a newer nonabsorbable antibiotic that is at least as effective as nonabsorbable disaccharides (lactulose) for the treatment of hepatic encephalopathy but with a lower incidence of abdominal pain and fewer hospitalizations.

Patients with recurrent hepatic encephalopathy found that rifaximin reduced hospitalizations for hepatic encephalopathy by approximately 50% and reduced the risk of hepatic encephalopathy breakthrough by 58%. These are good things.

As you said the real issue is cirrhosis. Do you have other symptoms of cirrhosis?
Do you have varices? An enlarged spleen? Portal hypertension? Have you experienced swelling of your ankles and or feet?
While platelet count is a good indicator of cirrhosis (my platelets average ~ 50-60 thousand) there are other diseases that can cause low platelet count also.

Have you been vaccinated for Hep A, B, pneumonia and the flu? You should be if you are cirrhotic.
A healthy lifestyle is important also. Others on this forum may have suggestions for you as far as diet and exercise. (Remember this if you have portal hypertension to not stress your system too much as exercise can increase blood pressure and cause varices to rupture).

Be vary careful about any drugs you take. They get processed by the liver and can stress or damage the liver. Obviously alcohol is to be avoided in any form, even in cough meds for example. Read the labels. So are NSAIDs. (ibuprofen, aleve, advil, motrin, celebrex, etc) For mild pain, Tylenol less then 2 grams a day is the recommended analgesic for cirrhotics.

I would be very careful about supplements as certain common supplements that may not be harmful for people without cirrhosis, can stress and damage cirrhotic livers. Some vitamins, such as vitamins D and A, are metabolized in the liver and can be toxic.

I am also waiting for PIs although I am showing signs of decompensation and may not be able to treat in a year when Telaprevir come to market in a year.

Good luck.
HectorSF
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