For many people who are eventually diagnosed with overt hepatic encephalopathy, or OHE, the first clue is a strange moment or a cluster of them: feeling completely drained despite a full night’s sleep, forgetting a name, or saying something out of character while out with friends.
Some of those symptoms can be easy to overlook or mistake for something else, but OHE is a serious brain-related complication of cirrhosis, or liver disease. The liver normally helps filter toxins from the blood. With cirrhosis, some of those toxins can bypass that process, reach the brain, and trigger symptoms, explains Natalie Oliver, PA-C, an advanced practice provider at Liver Specialists of Texas.
When toxins reach the brain, they disrupt normal function and can lead to confusion, memory problems, personality changes, disorientation, and in severe cases, coma. OHE is a serious complication of cirrhosis.
As Liver Awareness Month gets underway, patients and providers are talking more openly about what they wish more people understood. Read on to learn about the earliest signs of OHE, what day-to-day life with the condition can look like, and which treatment options are available.
What OHE Can Look Like for Patients
For Lorrinda, who developed OHE episodes while living with end-stage liver disease, the early warning signs were easy to dismiss. She was handling contracts, insurance, and bonding for construction projects, and coworkers noticed she was losing track of details before she did. “I was dealing with contracts and insurance and bonding on construction projects… And for me not to know where things were, I was questioned on it. I thought, Oh, you all are crazy. I’m just fine,” she recalls.
Outside of work, her aunt noticed something was off when Lorrinda forgot to blend her makeup. “My aunt is like, ‘Lorrinda, you should not leave the house. You should go maybe blend that,'” she says. “My aunt was trying to save me from what was happening.” Looking back, Lorrinda says the condition can create a very specific kind of blindness to one’s own symptoms: “That’s the thing about OHE, or HE, is you don’t know that you don’t know.”
Melaine, who lives with metabolic dysfunction-associated steatohepatitis, or MASH, and has managed OHE since 2013, first noticed a problem during an ordinary conversation with her niece. “I knew she was my brother’s daughter, but I [couldn’t] recall her name… it was my niece who is named after me,” she says. “I was so embarrassed because I’m sitting there trying to recall her name and at the same time she’s named after me.” Severe fatigue, reversed sleep patterns, and mood changes followed. “My mood was changing. Some of my family felt like I was more emotional, more paranoid and more sensitive than I normally would be.”
Her family also caught more alarming episodes. Her son told his father, “Mom scared me today while driving. She hit something.” On another night, Melaine went on a midnight shopping trip and had no memory of it the next day. “I bought $300 worth of merchandise. I did not recall any of it.”
Oliver says this pattern is common in her practice, which is why she speaks with both the patient and the caregiver. “Most of my patients don’t come in with symptoms. How can we expect our patients to know and recognize changes in symptoms and signs if they don’t know what they’re looking for?” she says. “Our caregivers or our loved ones who are around us all the time will be the first to notice.”
Treatment Options and What They Can Do
The encouraging news, according to patients and providers, is that OHE can be managed. Early diagnosis matters because the condition is progressive. “We have a medication called lactulose, which helps bind those toxins and eliminate them by stool,” Oliver says. “It’s important for patients to understand why they’re taking it, how to take it, what it does.”
There is also another option that may be used along with lactulose or on its own. “There’s a medicine called Xifaxan® (rifaximin) 550 mg tablets, which can be used if there’s a recurrence of hepatic encephalopathy,” Oliver explains. Xifaxan is the first and only prescription medicine approved to reduce the risk of overt hepatic encephalopathy recurrence in adults. Do not use Xifaxan if you are allergic to Xifaxan or any of its components, or to other rifamycin antibiotics. See full Important Safety Information below.
For Melaine, steady treatment plus lifestyle changes made a major difference. “I still have moments where I’m challenged with my OHE or my liver disease, but I am in a better place than I was previously,” she says.
Hepatologist Dr. Joseph Galati of Liver Specialists of Texas says the goal of catching OHE early is to expand the treatment window. “If you identify the fact that the symptoms that your family member has are related to liver disease and OHE, you’re going to get in earlier; you’re going to be assessed earlier. You may be sent to a specialist earlier,” he says. “Those are opportunities to make a firm diagnosis, intervene with appropriate medications as available, and do your best to reduce the risk of OHE episodes happening again.”
Living With OHE
According to Dr. Galati, the biggest challenge is not treatment, but awareness. “Overt hepatic encephalopathy is one of the earlier symptoms that patients will present with who have liver disease. It’s the tip of the iceberg,” he says. “Awareness of what the symptoms are, what the precipitating factors may be, will allow everybody to get these patients in to the doctor, and help them get diagnosed sooner. Getting a diagnosis and starting therapy is going to help them potentially experience less OHE recurrence.”
His message to patients and families is straightforward: “Raise your Health IQ so that you have the tools to have these discussions with your healthcare providers… and not to simply ignore the symptoms or assign it to something more common like getting older or being stressed out at work or not getting enough sleep. These are serious problems that we really, really want to identify early.”
If you or someone you love is living with liver disease and you notice changes in behavior, even subtle ones, speak with a hepatologist about OHE. As the patients and providers agree, the sooner symptoms are recognized and care begins, the better.
For more information about OHE and downloadable resources, visit Xifaxan.com.
INDICATION
XIFAXAN® (rifaximin) 550 mg tablets are indicated for the reduction in risk of overt hepatic encephalopathy (HE) recurrence in adults.
IMPORTANT SAFETY INFORMATION
- XIFAXAN is not for everyone. Do not take XIFAXAN if you have a known hypersensitivity to rifaximin, any of the rifamycin antimicrobial agents, or any of the components in XIFAXAN.
- If you take antibiotics, like XIFAXAN, there is a chance you could experience diarrhea caused by an overgrowth of bacteria (C. difficile). This can cause symptoms ranging in severity from mild diarrhea to life-threatening colitis. Contact your healthcare provider if your diarrhea does not improve or worsens.
- Talk to your healthcare provider before taking XIFAXAN if you have severe hepatic (liver) impairment, as this may cause increased effects of the medicine.
- Tell your healthcare provider if you are taking drugs called P-glycoprotein and/or OATPs inhibitors (such as cyclosporine) because using these drugs with XIFAXAN may lead to an increase in the amount of XIFAXAN absorbed by your body.
- In clinical studies, the most common side effects for XIFAXAN were:
- HE: Peripheral edema (swelling, usually in the ankles or lower limbs), constipation, nausea (feeling sick to your stomach), fatigue (feeling tired), insomnia (trouble sleeping), ascites (a buildup of fluid in the abdomen), dizziness, urinary tract infection, anemia (low red blood cell levels), and itching
- If you are pregnant, planning to become pregnant, or nursing, talk to your healthcare provider before taking XIFAXAN because XIFAXAN may cause harm to an unborn baby or nursing infant.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
For product information, adverse event reports, and product complaint reports, please contact:
Salix Product Information Call Center
Phone: 1-800-321-4576
Fax: 1-510-595-8183
XIF.0141.USA.26
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