My husband was diagnosed with HE resulting from ESLD in December 2010. As his caregiver, I can honestly say his HE flare-ups were the worst part of his disease. Unfortunately, I know of no probiotics that can be of help. Much as he hated taking lactulose three times a day, it is the only thing that helped keep his symptoms at bay. He was given Xifaxin, but after several months he developed severe itching and swelling of his legs and feet and had to stop it. Apparently this is not a common side effect for most, but the manufacturer's website says that they have not studied the drug with patients with Meld scores over 25 which was often where my husband's Meld score was. Neomysin was prescribed instead and almost gave him kidney failure. So thankfully, Lactulose was the only thing available to help him.
I don't have to tell you how difficult it is to adjust your life around taking this laxative. I'm sure that is why you are posting this question. My advice is to do your best to try to prevent the flare-ups of HE which can be brought on by:
1. dehydration - (drink plenty of water).
2. low salt in the blood as a result of dehydration
3. low potassium
4. bleeding or low hemoglobin
5. kidney failure
7. excess protein - (avoid eating red meat in particular)
I don't know the status of your liver disease, but since you have HE I am assuming it is advanced. If so, I hope you have been evaluated for a liver transplant at a transplant center. The only sure way of getting rid of your HE symptoms if you have advanced liver disease is by getting a liver transplant.
My husband received his new liver in June, 2012 and he no longer has any symptoms of HE and no longer needs his lactulose. Life changing!
I hope there are others who can help you better than I have. I just wanted you to know you are not alone in this and there is a light at the end of the tunnel.
All the best,
What are the most creditable/bio-available probiotics for HE.
There are NONE. The only study done was with yorgurt. In the “real world” anyone that has HE is taking either Lactulose or both Lactulose AND Xifaxan. Lactulose and Xifaxan work and work well despite the side effects from Lactulose. If you go into a coma from HE the treatment is Lactulose enemas so despite its nastiness, Lactulose can save your life.
You are correct Lactulose is "no fun". I have never met a liver disease patient yet who "likes" Lactulose. But then again... I haven't met a person yet that "likes" having End-Stage Liver Disease (ESLD) for which the only cure is a liver transplant or death either.
"A brain dysfunction caused by the accumulation of toxic chemicals in the blood stream. The normal liver acts as a filter removing harmful substances from the blood. With cirrhosis the liver is not able to remove a variety of toxic chemicals. These chemical remain in the blood and eventually enter the brain, causing a variety of disturbances with brain function. The toxin most easily identified is ammonia."
"Fatigue, sleepiness, confusion, depression, irritability, personality changes, forgetfulness, slurred speech, tremors (shakes), and problems with balance may occur. As the condition worsens, patients become more sleepy and eventually lapse into a coma. Some patients with encephalopathy develop a peculiar odor on their breath (fetor hepaticus) from the toxins."
All patient with moderate to severe HE should be evaluated for liver transplant.
• Symptoms of HE may progress slowly, or may occur suddenly
• Common symptoms of HE include confusion, forgetfulness, personality or mood changes, poor concentration and judgment, stale or sweet odored breath, change in sleep patterns, and worsening of handwriting or small hand movements
• People with HE can enter a coma or have brain damage
• HE can be a medical emergency and hospitalization is usually required
• Treatments aim to manage the disease and keep people out of the hospital
• The best way to reduce the risk of HE is to prevent, treat, or manage liver disease
NO red meat should be eaten. It creates lots of toxins and causes HE.
Consume well-cooked chicken and fish in addition to vegetable protein.
Lactulose is considered the first-line therapy for HE. The usual oral dose of lactulose is about 15-30 ml given twice a day to induce 2-3 soft bowel movements daily. Abdominal bloating and a sweet taste in the mouth are the principal adverse effects associated with normal doses of lactulose
Xifaxan/Rifaximin works in a different way. It's an antibiotic that reduces the amount of ammonia produced in the gut. (It doesn't draw fluid into the bowel like lactulose or kristalose does.)
"Lactulose is a liquid laxative that binds with ammonia and removes it from the body via stool. Kristalose is lactulose in a powder form. (The only difference in lactulose and kristalose is the form--- one is a liquid, the other is a powder.) Some people seem to prefer the kristalose (powder) because it is tasteless.... while the lactulose (liquid) is very sweet. But basically they are the same drug, just in two different forms. Both draw fluid into the bowel (so both cause loose stools.)
Generally--- the goal while taking lactulose or kristalose is to have 2 - 4 bowel movements per day. "
NOTE: Keep in mind that too much diarrhea can cause dehydration.... and dehydration can also cause encephalopathy to become worse.
So the goal while taking lactulose (or kristalose) is to take enough to keep encephalopathy under control--- but not so much as to cause dehydration.
Lactulose is available as a generic. (So it's affordable for just about everyone.)
Kristalose is a brand name drug-- so it's price depends on the insurance coverage a person has.
Xifaxan is a brand name drug-- so it's price depends on the insurance coverage a person has.
Salix Pharmaceuticals Patient Assistance Program
Xifaxan (rifaximin )
To receive free Xifaxan you must have an income of less than 200% of the Federal Poverty Level.
To qualify to receive free Xifaxan go to the following web page and see if you qualify.
Then fill out the form.
This is a band aid solution to a very bigger problem. The real issue is health insurance. Anyone with cirrhosis must have health insurance to properly manager their potentially fatal disease or they are risking their life by not receiving proper treatment. Before receiving a transplant, the majority of patients with hepatitis C caused liver disease will suffer many life-threatening complications of cirrhosis and will need to be hospitalized to remain alive. Also to not have imaging surveillance every 6 months for HCC (liver cancer) you are risking your life. Males with cirrhosis caused by hepatitis C have one of the highest risks of liver cancer among all patients with cirrhosis. Without imaging surveillance by the time you feel any symptoms from liver cancer it is usually too late. At that point you will only have a few months to live. Have you thought of how progressive liver disease will affect your family as you become more and more disabled? Even if your hepatitis C is eliminated, your liver disease could still progress and you will always have and increased risk of liver cancer because you have had cirrhosis. Without medical insurance you will receive substandard care for a potentially fatal disease and without proper monitoring of the disease, prognosis for survival is poor.
I have had HE for 3 years and have taken both Xifaxan and Kristalose which help to manage the HE symptoms but don't eliminate them totally. No one with advanced cirrhosis thinks clearly or has the memory they once had. Luckily after transplant, all symptoms of HE disappear.
Hope this helps.
Thank you for the Xifaxan program information. I am taking both Lactalose and Xifaxan (the latter just once a day since I only have 1 bottle with 60 tablets). One note: You asked " Have you thought of how progressive liver disease will affect your family as you become more and more disabled?" Was that a rhetorical question? And do you really think I am not aware how precarious having no insurance leaves me? I'm trying to stand tall and have the courage to do the best I can until i'm reemployed!
I was taking many supplements while sick with cirrhosis. But despite that and eating a good diet ( no red meat et. al.) the only time I landed up in the E.R. because of my cirrhosis, was when I wasn't taking lactulose. I was delirious.
They put me back on lactulose and it never happened again.
No, the stuff isn't fun. A wise GI told me to gauge how much I take by how many stools I have daily. Three soft ones, is how he described it. Too many, lower the dose, too few, increase it.
I didn't mean to offend you. I am sorry if it came off that way. Of course you are standing tall. My point was, which I obviously bungled, was not having a job should not be a barrier to obtaining some form of health insurance. Particularly as you have a serious illness and should be receiving the best care possible both for yourself and your family.
I should have asked if are you aware of your options for receiving health insurance when not receiving it through an employer? Hopefully this info will be more helpful to you than my last post.
If you have HE and one other complication from cirrhosis you may be eligible for Social Security Disability Insurance (SSDI) or SSI and Medicaid. I had both HE and ascites which met the Social Security requirement for being awarded SSDI. I now have Medicare health insurance. Without it I would be lost.
I believe New York State itself has many state programs (besides federal programs such as SSI.SSDI) for helping persons without health insurance. Have you looked into them? As you know they are many people in the same boat so to speak who have lost their health insurance due to job loss.
Here is a link to The New York State Health Insurance Programs web page
Here is the link to the ACCESS NY Public Health Insurance Eligibility Screening Tool to see which public health insurance programs you and your family may be eligible for.
If you are ill to the point of being disabled and having ESLD I can help you through that process as I successfully applied and received my "award of approval" with a few months. It is quite a pile of red tape but it is doable.
Let us know what you find out.
Here is a link to the Social Security requirements needed to receiving SS benefits for liver disease with HE.
Disability Evaluation Under Social Security
(Blue Book- September 2008)
5.00 Digestive System - Adult
5.05 Chronic liver disease,with:
"F. Hepatic encephalopathy as described in 5.00D10, with 1 and either 2 or 3:
1. Documentation of abnormal behavior, cognitive dysfunction, changes in mental status, or altered state of consciousness (for example, confusion, delirium, stupor, or coma), present on at least two evaluations at least 60 days apart within a consecutive 6-month period; and
2. History of transjugular intrahepatic portosystemic shunt (TIPS) or any surgical portosystemic shunt; or
3. One of the following occurring on at least two evaluations at least 60 days apart within the same consecutive 6-month period as in F1:
a. Asterixis or other fluctuating physical neurological abnormalities; or
b. Electroencephalogram (EEG) demonstrating triphasic slow wave activity; or
c. Serum albumin of 3.0 g/dL or less; or
d. International Normalized Ratio (INR) of 1.5 or greater.
G. End stage liver disease with SSA CLD scores of 22 or greater calculated as described in 5.00D11. Consider under a disability from at least the date of the first score."
Again, I apologize for seeming to imply that you haven't been working at overcoming both your hepatitis C and your liver disease. I misspoke and never meant to imply you are working to do everything in your power to overcome your disease.
As always Hector: You're the best.......Gotta run to the bathroom now ;)