Finley, real person living with Alagille syndrome
and his parents, Jay and Dani
Individual experiences may vary.
Finley, real person living with Alagille syndrome
and his parents, Jay and Dani
“It’s fine”
Are you or your loved one really fine? Many patients with Alagille syndrome and their families may minimize the symptoms of cholestatic pruritus. Hear from these real patients and their families about how they realized they weren’t fine and what they did to address it. Their experiences may inspire you to talk to your doctor.
Because any level of cholestatic pruritus deserves attention.
On average, people say
“I’m fine”
Some facts
around fine
Are your conversations about cholestatic pruritus only skimming the surface?
In one survey of people living with Alagille syndrome,
Nearly 30%
said their doctor discussed signs and symptoms of cholestatic pruritus, but not in detail.
However,
almost 20%
said cholestatic pruritus was not discussed at all.
Cholestatic pruritus is often normalized and overlooked
- Seasonal changes
- Possible irritants, like laundry soap
- Skin conditions that may cause itch
- Allergies
- Symptoms were mild compared with those experienced by others with cholestatic pruritus in Alagille syndrome
- It was just a “flare-up”
- They could wait it out
- Nothing more could be done
Not everyone living with cholestatic pruritus shares their experiences with their doctor
of patients with chronic illness
find it difficult to share their feelings with their doctor.
Hear their stories
around the fines
Previous
Next
Emma: [00:00:00] I learned to fight the urge to scratch in public. Actually, before I’d go anywhere, I would just scratch while I was still home. Eventually though, I just broke down. I was not fine.
Jay: We tried consoling him, but nothing worked. In [00:00:30] hindsight, it wasn’t typical newborn behavior. Something else was wrong and he wasn’t fine.
Terisa: I tried blaming his itch on something else. I told myself, “It’s fine, maybe he just has allergies.” We learned to live with it because that’s what was normal for us. We didn’t know any different, but I know now he was far from fine.
Abby: I didn’t realize how bad the itch was until I found relief. Looking back, I was scared to talk about my cholestatic pruritus, [00:01:00] because I didn’t know what my future looked like. Now I understand, I wasn’t fine.
Michelle: It wasn’t until Téa started taking LIVMARLI that we realized how bad her itch had been. Scratching through the night should not be the norm. Looking back, she wasn’t fine. Are you reading between the fines?
Voiceover 1: Even the occasional scratching deserves to be addressed. Talk to your doctor about the everyday impact cholestatic pruritus can have.
Voiceover 2:
INDICATION
LIVMARLI [00:01:30] LIVMARLI is a prescription medicine used to treat cholestatic pruritus (itch) in patients who are 3 months of age and older with Alagille syndrome.
It is not known if LIVMARLI is safe and effective in children with Alagille syndrome who are under 3 months of age. It is not known if LIVMARLI is safe and effective in adults who are 65 years of age and older.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of LIVMARLI?
LIVMARLI can cause serious side effects, including:
Liver injury. Changes in certain liver [00:02:00] tests are common in patients but may worsen during treatment with LIVMARLI. These changes may be a sign of liver injury and can be serious. Your health care provider should do blood tests and physical exams before starting and during treatment to check your liver function. Tell your health care provider right away if you get any signs or symptoms of liver problems, including:
- nausea or vomiting
- your skin or the white part of your eye turns yellow
- dark or brown urine
- pain on the right side of your stomach (abdomen)
- fullness, bloating, or fluid in your stomach area (ascites)
- loss of [00:02:30] appetite
- bleeding or bruising more easily than normal, including vomiting blood
Stomach and intestinal (gastrointestinal) problems. LIVMARLI can cause stomach and intestinal problems, including diarrhea and stomach pain during treatment. Diarrhea can also cause the loss of too much body fluid (severe dehydration). Your health care provider may advise you to monitor for new or worsening stomach problems, including stomach pain, diarrhea, blood in your stool, or vomiting
Tell your health care provider right away if you have any new or worsening signs [00:03:00] or symptoms of stomach and intestinal problems, including:
- diarrhea
- more frequent bowel movements than usual
- stools that are black, tarry, or sticky, or have blood or mucous
- severe stomach-area pain or tenderness
- vomiting
- urinating less often than usual
- dizziness
- headache
A condition called Fat-Soluble Vitamin (FSV) Deficiency caused by low levels of certain vitamins (vitamin A, D, E, and K) stored in body fat. FSV deficiency is common in patients with Alagille syndrome but may worsen during [00:03:30] treatment. Your health care provider should do blood tests before starting and during treatment, and may monitor for bone fractures and bleeding, which are common side effects
Tell your health care provider about all medicines that you take, as LIVMARLI may interact with other medicines. If you take a medicine that lowers cholesterol by binding bile acids, such as cholestyramine, colesevelam, or colestipol, take it at least 4 hours before or 4 hours after you take LIVMARLI.
Your health care provider may change your dose, or temporarily or permanently stop treatment if you have [00:04:00] certain side effects.
LIVMARLI is taken by mouth, 1 time each day, 30 minutes before a meal in the morning. Be sure to use the provided oral dosing dispenser to accurately measure the dose of medicine.
These are not all of the possible side effects of LIVMARLI. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
[music]
[00:04:30] [END]
Emma: [00:00:00] I learned to fight the urge to scratch in public. Before I’d go anywhere, I would take time out of my day to scratch. When people would ask about my itching though, I just said I was fine because I felt helpless at the time. They couldn’t help me and I couldn’t help myself, so why even bring it up? Looking back now though, I was not fine.
Voiceover 1: Even the occasional scratching deserves to be addressed. Talk to your doctor about the everyday impact [00:00:30] cholestatic pruritus can have.
Voiceover 2:
INDICATION
LIVMARLI is a prescription medicine used to treat cholestatic pruritus (itch) in patients who are 3 months of age and older with Alagille syndrome.
It is not known if LIVMARLI is safe and effective in children with Alagille syndrome who are under 3 months of age. It is not known if LIVMARLI is safe and effective in adults who are 65 years of age and older.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of LIVMARLI?
LIVMARLI can cause [00:01:00] serious side effects, including:
Liver injury. Changes in certain liver tests are common in patients but may worsen during treatment with LIVMARLI. [00:01:00] These changes may be a sign of liver injury and can be serious. Your health care provider should do blood tests and physical exams before starting and during treatment to check your liver function. Tell your health care provider right away if you get any signs or symptoms of liver problems, including:
- nausea or vomiting
- your skin or the white part of your eye turns yellow
- dark or brown urine
- pain on the right side of your stomach (abdomen) [00:01:30]
- fullness, bloating, or fluid in your stomach area (ascites)
- loss of appetite
- bleeding or bruising more easily than normal, including vomiting blood
Stomach and intestinal (gastrointestinal) problems. LIVMARLI can cause stomach and intestinal problems, including diarrhea and stomach pain during treatment. Diarrhea can also cause the loss of too much body fluid (severe dehydration). Your health care provider may advise you to monitor for new or worsening stomach problems, including stomach pain, diarrhea, blood in your stool, or vomiting [00:02:00]
Tell your health care provider right away if you have any new or worsening signs or symptoms of stomach and intestinal problems, including:
- diarrhea
- more frequent bowel movements than usual
- stools that are black, tarry, or sticky, or have blood or mucous
- severe stomach-area pain or tenderness
- vomiting
- urinating less often than usual
- dizziness
- headache
A condition called Fat-Soluble Vitamin (FSV) Deficiency caused by low levels of certain vitamins (vitamin A, D, E, and K) stored in body fat. [00:02:30] FSV deficiency is common in patients with Alagille syndrome but may worsen during treatment. Your health care provider should do blood tests before starting and during treatment, and may monitor for bone fractures and bleeding, which are common side effects
Tell your health care provider about all medicines that you take, as LIVMARLI may interact with other medicines. If you take a medicine that lowers cholesterol by binding bile acids, such as cholestyramine, colesevelam, or colestipol, take it at least 4 hours before or 4 hours after you take LIVMARLI.
Your health care provider [00:03:00] may change your dose, or temporarily or permanently stop treatment if you have certain side effects.
LIVMARLI is taken by mouth, 1 time each day, 30 minutes before a meal in the morning. Be sure to use the provided oral dosing dispenser to accurately measure the dose of medicine.
These are not all of the possible side effects of LIVMARLI. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. [00:03:30]
[music]
[END OF AUDIO]
Michelle: [00:00:00] We really didn’t want to acknowledge the itching. We just found ways around it. We would keep the house cool. We would wash her sheets every day. Then, when Téa started taking LIVMARLI, we really realized that she hadn’t been fine.
Voiceover 1: Even the occasional scratching deserves to be addressed. Talk to your doctor about the everyday impact cholestatic pruritus can have.
Voiceover 2:
INDICATION
LIVMARLI is a prescription medicine used to treat cholestatic pruritus [00:00:30] (itch) in patients who are 3 months of age and older with Alagille syndrome.
It is not known if LIVMARLI is safe and effective in children with Alagille syndrome who are under 3 months of age. It is not known if LIVMARLI is safe and effective in adults who are 65 years of age and older.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of LIVMARLI?
LIVMARLI can cause serious side effects, including:
Liver injury. Changes in certain liver tests are common in patients but may worsen during treatment with LIVMARLI. [00:01:00] These changes may be a sign of liver injury and can be serious. Your health care provider should do blood tests and physical exams before starting and during treatment to check your liver function. Tell your health care provider right away if you get any signs or symptoms of liver problems, including:
- nausea or vomiting
- your skin or the white part of your eye turns yellow
- dark or brown urine
- pain on the right side of your stomach (abdomen)
- fullness, bloating, or fluid in your stomach area (ascites)
- loss of appetite
- bleeding or bruising more easily than normal, including vomiting [00:01:30] blood
Stomach and intestinal (gastrointestinal) problems. LIVMARLI can cause stomach and intestinal problems, including diarrhea and stomach pain during treatment. Diarrhea can also cause the loss of too much body fluid (severe dehydration). Your health care provider may advise you to monitor for new or worsening stomach problems, including stomach pain, diarrhea, blood in your stool, or vomiting
Tell your health care provider right away if you have any new or worsening signs or symptoms of stomach and intestinal problems, including:
- diarrhea [00:02:00]
- more frequent bowel movements than usual
- stools that are black, tarry, or sticky, or have blood or mucous
- severe stomach-area pain or tenderness
- vomiting
- urinating less often than usual
- dizziness
- headache
A condition called Fat-Soluble Vitamin (FSV) Deficiency caused by low levels of certain vitamins (vitamin A, D, E, and K) stored in body fat. FSV deficiency is common in patients with Alagille syndrome but may worsen during treatment. Your health care provider should do blood tests before starting [00:02:30] and during treatment, and may monitor for bone fractures and bleeding, which are common side effects
Tell your health care provider about all medicines that you take, as LIVMARLI may interact with other medicines. If you take a medicine that lowers cholesterol by binding bile acids, such as cholestyramine, colesevelam, or colestipol, take it at least 4 hours before or 4 hours after you take LIVMARLI.
Your health care provider may change your dose, or temporarily or permanently stop treatment if you have certain side effects.
LIVMARLI is taken by mouth, 1 time each day, [00:03:00] 30 minutes before a meal in the morning. Be sure to use the provided oral dosing dispenser to accurately measure the dose of medicine.
These are not all of the possible side effects of LIVMARLI. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
[music]
[00:03:28] [END OF AUDIO]
Abby: [00:00:00] I itched and rubbed my feet, and my friends used to think it was just who I was and I had accepted it, too. It wasn’t until I found relief that I realized how bad it was and how important it is to talk to your doctor. I was always scared to talk about my cholestatic pruritus, because I didn’t know what else could be done. Now I understand, I wasn’t fine.
Voiceover 1: Even the occasional scratching deserves to be addressed. Talk to your doctor about the [00:00:30] everyday impact cholestatic pruritus can have.
Voiceover 2:
INDICATION
LIVMARLI is a prescription medicine used to treat cholestatic pruritus (itch) in patients who are 3 months of age and older with Alagille syndrome.
It is not known if LIVMARLI is safe and effective in children with Alagille syndrome who are under 3 months of age. It is not known if LIVMARLI is safe and effective in adults who are 65 years of age and older.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of LIVMARLI?
LIVMARLI can cause [00:01:00] serious side effects, including:
Liver injury. Changes in certain liver tests are common in patients but may worsen during treatment with LIVMARLI. These changes may be a sign of liver injury and can be serious. Your health care provider should do blood tests and physical exams before starting and during treatment to check your liver function. Tell your health care provider right away if you get any signs or symptoms of liver problems, including:
- nausea or vomiting
- your skin or the white part of your eye turns yellow
- dark or brown urine
- pain on the right side of your stomach (abdomen) [00:01:30]
- fullness, bloating, or fluid in your stomach area (ascites)
- loss of appetite
- bleeding or bruising more easily than normal, including vomiting blood
Stomach and intestinal (gastrointestinal) problems. LIVMARLI can cause stomach and intestinal problems, including diarrhea and stomach pain during treatment. Diarrhea can also cause the loss of too much body fluid (severe dehydration). Your health care provider may advise you to monitor for new or worsening stomach problems, including stomach pain, diarrhea, blood in your stool, or vomiting [00:02:00]
Tell your health care provider right away if you have any new or worsening signs or symptoms of stomach and intestinal problems, including:
- diarrhea
- more frequent bowel movements than usual
- stools that are black, tarry, or sticky, or have blood or mucous
- severe stomach-area pain or tenderness
- vomiting
- urinating less often than usual
- dizziness
- headache
A condition called Fat-Soluble Vitamin (FSV) Deficiency caused by low levels of certain vitamins (vitamin A, D, E, and K) stored in body fat. [00:02:30] FSV deficiency is common in patients with Alagille syndrome but may worsen during treatment. Your health care provider should do blood tests before starting and during treatment, and may monitor for bone fractures and bleeding, which are common side effects
Tell your health care provider about all medicines that you take, as LIVMARLI may interact with other medicines. If you take a medicine that lowers cholesterol by binding bile acids, such as cholestyramine, colesevelam, or colestipol, take it at least 4 hours before or 4 hours after you take LIVMARLI.
Your health care provider [00:03:00] may change your dose, or temporarily or permanently stop treatment if you have certain side effects.
LIVMARLI is taken by mouth, 1 time each day, 30 minutes before a meal in the morning. Be sure to use the provided oral dosing dispenser to accurately measure the dose of medicine.
These are not all of the possible side effects of LIVMARLI. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
[music]
[00:03:30] [END OF AUDIO]
[00:00:00] [music]
Dani: We tried to console him and nothing worked. We’d give him a bottle, but he wasn’t hungry. He’d rub against me; I just thought he was being affectionate. He’d shuffle his feet, kick his legs...what baby doesn’t? Looking back now, it wasn’t typical newborn behavior. He wasn’t fine.
Voiceover 1: Even the occasional scratching deserves to be addressed. [00:00:30] Talk to your doctor about the everyday impact cholestatic pruritus can have.
Voiceover 2:
INDICATION
LIVMARLI is a prescription medicine used to treat cholestatic pruritus (itch) in patients who are 3 months of age and older with Alagille syndrome.
It is not known if LIVMARLI is safe and effective in children with Alagille syndrome who are under 3 months of age. It is not known if LIVMARLI is safe and effective in adults who are 65 years of age and older.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of [00:01:00] LIVMARLI?
LIVMARLI can cause serious side effects, including:
Liver injury. Changes in certain liver tests are common in patients but may worsen during treatment with LIVMARLI. These changes may be a sign of liver injury and can be serious. Your health care provider should do blood tests and physical exams before starting and during treatment to check your liver function. Tell your health care provider right away if you get any signs or symptoms of liver problems, including:
- nausea or vomiting
- your skin or the white part of your eye turns yellow
- dark or brown urine [00:01:30]
- pain on the right side of your stomach (abdomen)
- fullness, bloating, or fluid in your stomach area (ascites)
- loss of appetite
- bleeding or bruising more easily than normal, including vomiting blood
Stomach and intestinal (gastrointestinal) problems. LIVMARLI can cause stomach and intestinal problems, including diarrhea and stomach pain during treatment. Diarrhea can also cause the loss of too much body fluid (severe dehydration). Your health care provider may advise you to monitor for new or worsening stomach problems, including stomach pain, [00:02:00] diarrhea, blood in your stool, or vomiting
Tell your health care provider right away if you have any new or worsening signs or symptoms of stomach and intestinal problems, including:
- diarrhea
- more frequent bowel movements than usual
- stools that are black, tarry, or sticky, or have blood or mucous
- severe stomach-area pain or tenderness
- vomiting
- urinating less often than usual
- dizziness
- headache
A condition called Fat-Soluble Vitamin (FSV) Deficiency caused by low levels of certain vitamins (vitamin A, D, E, [00:02:30] and K) stored in body fat. FSV deficiency is common in patients with Alagille syndrome but may worsen during treatment. Your health care provider should do blood tests before starting and during treatment, and may monitor for bone fractures and bleeding, which are common side effects
Tell your health care provider about all medicines that you take, as LIVMARLI may interact with other medicines. If you take a medicine that lowers cholesterol by binding bile acids, such as cholestyramine, colesevelam, or colestipol, take it at least 4 hours before or 4 hours after [00:03:00] you take LIVMARLI.
Your health care provider may change your dose, or temporarily or permanently stop treatment if you have certain side effects.
LIVMARLI is taken by mouth, 1 time each day, 30 minutes before a meal in the morning. Be sure to use the provided oral dosing dispenser to accurately measure the dose of medicine.
These are not all of the possible side effects of LIVMARLI. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at [00:03:30] 1-800-FDA-1088.
[music]
[00:03:39] [END OF AUDIO]
Terisa: [00:00:00] He used to fidget a lot and I would tell myself, “It’s fine, maybe he just has allergies,” or, “Maybe it’s the weather.” Everyone around us had downplayed it, so it became normal for us. When I did talk to his doctor, I felt he listened, but we did feel that we exhausted all the options of treatment for cholestatic pruritus. But we know now, he was far from fine.
Voiceover 1: Even the occasional scratching deserves to be addressed. Talk to your doctor about the [00:00:30] everyday impact cholestatic pruritus can have.
Voiceover 2:
INDICATION
LIVMARLI is a prescription medicine used to treat cholestatic pruritus (itch) in patients who are 3 months of age and older with Alagille syndrome.
It is not known if LIVMARLI is safe and effective in children with Alagille syndrome who are under 3 months of age. It is not known if LIVMARLI is safe and effective in adults who are 65 years of age and older.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of LIVMARLI?
LIVMARLI can cause [00:01:00] serious side effects, including:
Liver injury. Changes in certain liver tests are common in patients but may worsen during treatment with LIVMARLI. These changes may be a sign of liver injury and can be serious. Your health care provider should do blood tests and physical exams before starting and during treatment to check your liver function. Tell your health care provider right away if you get any signs or symptoms of liver problems, including:
- nausea or vomiting
- your skin or the white part of your eye turns yellow
- dark or brown urine
- pain on the right side of your stomach (abdomen) [00:01:30]
- fullness, bloating, or fluid in your stomach area (ascites)
- loss of appetite
- bleeding or bruising more easily than normal, including vomiting blood
Stomach and intestinal (gastrointestinal) problems. LIVMARLI can cause stomach and intestinal problems, including diarrhea and stomach pain during treatment. Diarrhea can also cause the loss of too much body fluid (severe dehydration). Your health care provider may advise you to monitor for new or worsening stomach problems, including stomach pain, diarrhea, blood in your stool, [00:02:00] or vomiting
Tell your health care provider right away if you have any new or worsening signs or symptoms of stomach and intestinal problems, including:
- diarrhea
- more frequent bowel movements than usual
- stools that are black, tarry, or sticky, or have blood or mucous
- severe stomach-area pain or tenderness
- vomiting
- urinating less often than usual
- dizziness
- headache
A condition called Fat-Soluble Vitamin (FSV) Deficiency caused by low levels of certain vitamins (vitamin A, D, E, and K) stored in body [00:02:30] fat. FSV deficiency is common in patients with Alagille syndrome but may worsen during treatment. Your health care provider should do blood tests before starting and during treatment, and may monitor for bone fractures and bleeding, which are common side effects
Tell your health care provider about all medicines that you take, as LIVMARLI may interact with other medicines. If you take a medicine that lowers cholesterol by binding bile acids, such as cholestyramine, colesevelam, or colestipol, take it at least 4 hours before or 4 hours after you take LIVMARLI.
Your health care provider [00:03:00] may change your dose, or temporarily or permanently stop treatment if you have certain side effects.
LIVMARLI is taken by mouth, 1 time each day, 30 minutes before a meal in the morning. Be sure to use the provided oral dosing dispenser to accurately measure the dose of medicine.
These are not all of the possible side effects of LIVMARLI. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
[music]
[00:03:30] [END OF AUDIO]
Identifying the signs
Have you spotted any signals of cholestatic pruritus?
Talking to your doctor
A resource to help guide the conversation
A resource to help identify common signs of cholestatic pruritus, and some that may be misinterpreted or not recognized.
