Tyler, real patient living with Alagille syndrome and his mom, Terisa
Individual experiences may vary.
Tyler, real patient living with Alagille syndrome and his mom, Terisa
“It’s fine”
Are your patients 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 inquire further with your patients.
People say,
“I’m fine”
Some facts
around fine
Are your conversations about cholestatic pruritus only skimming the surface?
In one survey of patients with Alagille syndrome,
Nearly 30%
said they talked to their doctor about cholestatic pruritus, but not in detail.2
However,
~20%
said cholestatic pruritus was not discussed at all.2
Patients and caregivers may normalize symptoms
The signs and symptoms of cholestatic pruritus can appear in many ways and may be difficult to connect to Alagille syndrome.
- 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
Patients may not be comfortable bringing up cholestatic pruritus on their own
of patients with chronic illness
find it difficult to share their feelings with their physician.9Hear their stories
surrounding the fines
Previous
Next
[00:00:00]
[pause 00:00:00]
[music]
Emma: 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 works. 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 because [00:01:00] 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: Any level of cholestatic pruritus in Alagille syndrome deserves to be addressed. Find out how you can help your patients talk about their symptoms.
Voiceover 2:
INDICATION
[00:01:30] LIVMARLI is indicated for the treatment of cholestatic pruritus in patients who are 3 months of age and older with Alagille syndrome.
IMPORTANT SAFETY INFORMATION
CONTRAINDICATIONS
Contraindicated in patients with prior or active hepatic decompensation events (eg, variceal hemorrhage, ascites, or hepatic encephalopathy).
WARNINGS AND PRECAUTIONS
Hepatotoxicity: Treatment-emergent elevations or worsening of liver tests have occurred. Obtain baseline liver tests [00:02:00] and monitor during treatment; monitor also for liver-related adverse reactions and signs of hepatic decompensation. Dose reduction or treatment interruption may be considered if abnormalities occur. Permanently discontinue if persistent liver test abnormalities, clinical hepatitis upon rechallenge, or hepatic decompensation occur.
Gastrointestinal Adverse Reactions: Diarrhea and abdominal pain were reported as the most common adverse reactions in patients treated with LIVMARLI. [00:02:30] Consider reducing the dosage or interrupting treatment if a patient experiences persistent diarrhea or abdominal pain.
Fat-Soluble Vitamin (FSV) Deficiency: Obtain baseline levels and monitor during treatment. Supplement vitamins if deficiency is observed. Consider interrupting LIVMARLI if bone fractures or bleeding occur.
Risk of Propylene Glycol Toxicity (Pediatric Patients Less Than 5 Years of Age): Total daily intake of propylene glycol should be considered for managing [00:03:00] the risk of propylene glycol toxicity. Monitor patients for signs of propylene glycol toxicity. Discontinue LIVMARLI if toxicity is suspected.
[music]
[00:03:14] [END OF AUDIO]
Emma: 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 had asked 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: Any level of cholestatic pruritus in Alagille syndrome deserves to be addressed. Find out how you can help your patients talk about their symptoms [00:00:30].
Voiceover 2:
INDICATION
LIVMARLI is indicated for the treatment of cholestatic pruritus in patients who are 3 months of age and older with Alagille syndrome.
IMPORTANT SAFETY INFORMATION
CONTRAINDICATIONS
Contraindicated in patients with prior or active hepatic decompensation events (eg, variceal hemorrhage, ascites, or hepatic encephalopathy).
WARNINGS AND PRECAUTIONS
Hepatotoxicity: Treatment-emergent elevations [00:01:00] or worsening of liver tests have occurred. Obtain baseline liver tests and monitor during treatment; monitor also for liver-related adverse reactions and signs of hepatic decompensation. Dose reduction or treatment interruption may be considered if abnormalities occur. Permanently discontinue if persistent liver test abnormalities, clinical hepatitis upon rechallenge, or hepatic decompensation occur.
Gastrointestinal Adverse Reactions: Diarrhea and abdominal pain were reported as the most common adverse reactions [00:01:30] in patients treated with LIVMARLI. Consider reducing the dosage or interrupting treatment if a patient experiences persistent diarrhea or abdominal pain.
Fat-Soluble Vitamin (FSV) Deficiency: Obtain baseline levels and monitor during treatment. Supplement vitamins if deficiency is observed. Consider interrupting LIVMARLI if bone fractures or bleeding occur.
Risk of Propylene Glycol Toxicity (Pediatric Patients Less Than 5 Years of Age): Total daily intake [00:02:00] of propylene glycol should be considered for managing the risk of propylene glycol toxicity. Monitor patients for signs of propylene glycol toxicity. Discontinue LIVMARLI if toxicity is suspected.
[00:02:17] [END OF AUDIO]
Michelle: 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. And then, when Téa started taking LIVMARLI, we really realized that she hadn’t been fine.
Voiceover 1: Any level of cholestatic pruritus in Alagille syndrome deserves to be addressed. Find out how you can help your patients talk about their symptoms.
Voiceover 2:
INDICATION
LIVMARLI is indicated for the treatment of cholestatic pruritus in patients who are 3 months of age and older [00:00:30] with Alagille syndrome.
IMPORTANT SAFETY INFORMATION
CONTRAINDICATIONS
Contraindicated in patients with prior or active hepatic decompensation events (eg, variceal hemorrhage, ascites, or hepatic encephalopathy).
WARNINGS AND PRECAUTIONS
Hepatotoxicity: Treatment-emergent elevations or worsening of liver tests have occurred. Obtain baseline liver tests and monitor during treatment; monitor also for liver-related adverse reactions [00:01:00] and signs of hepatic decompensation. Dose reduction or treatment interruption may be considered if abnormalities occur. Permanently discontinue if persistent liver test abnormalities, clinical hepatitis upon rechallenge, or hepatic decompensation occur.
Gastrointestinal Adverse Reactions: Diarrhea and abdominal pain were reported as the most common adverse reactions in patients treated with LIVMARLI. Consider reducing the dosage or interrupting treatment if a patient experiences persistent diarrhea [00:01:30] or abdominal pain.
Fat-Soluble Vitamin (FSV) Deficiency: Obtain baseline levels and monitor during treatment. Supplement vitamins if deficiency is observed. Consider interrupting LIVMARLI if bone fractures or bleeding occur.
Risk of Propylene Glycol Toxicity (Pediatric Patients Less Than 5 Years of Age): Total daily intake of propylene glycol should be considered for managing the risk of propylene glycol toxicity. Monitor patients for signs of propylene glycol toxicity [00:02:00]. Discontinue LIVMARLI if toxicity is suspected.
[00:02:09] [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: Any level of cholestatic pruritus in Alagille syndrome deserves to be addressed. Find out how you can help your patients talk about their symptoms [00:00:30].
Voiceover 2:
INDICATION
LIVMARLI is indicated for the treatment of cholestatic pruritus in patients who are 3 months of age and older with Alagille syndrome.
IMPORTANT SAFETY INFORMATION
CONTRAINDICATIONS
Contraindicated in patients with prior or active hepatic decompensation events (eg, variceal hemorrhage, ascites, or hepatic encephalopathy).
WARNINGS AND PRECAUTIONS
Hepatotoxicity: Treatment-emergent elevations [00:01:00] or worsening of liver tests have occurred. Obtain baseline liver tests and monitor during treatment; monitor also for liver-related adverse reactions and signs of hepatic decompensation. Dose reduction or treatment interruption may be considered if abnormalities occur. Permanently discontinue if persistent liver test abnormalities, clinical hepatitis upon rechallenge, or hepatic decompensation occur.
Gastrointestinal Adverse Reactions: Diarrhea and abdominal pain were reported as the most common adverse reactions [00:01:30] in patients treated with LIVMARLI. Consider reducing the dosage or interrupting treatment if a patient experiences persistent diarrhea or abdominal pain.
Fat-Soluble Vitamin (FSV) Deficiency: Obtain baseline levels and monitor during treatment. Supplement vitamins if deficiency is observed. Consider interrupting LIVMARLI if bone fractures or bleeding occur.
Risk of Propylene Glycol Toxicity (Pediatric Patients Less Than 5 Years of Age): Total daily intake [00:02:00] of propylene glycol should be considered for managing the risk of propylene glycol toxicity. Monitor patients for signs of propylene glycol toxicity. Discontinue LIVMARLI if toxicity is suspected.
[00:02:17] [END OF AUDIO]
Dani: [00:00:00] 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: Any level of cholestatic pruritus in Alagille syndrome deserves to be addressed [00:00:30]. Find out how you can help your patients talk about their symptoms.
Voiceover 2:
INDICATION
LIVMARLI is indicated for the treatment of cholestatic pruritus in patients who are 3 months of age and older with Alagille syndrome.
IMPORTANT SAFETY INFORMATION
CONTRAINDICATIONS
Contraindicated in patients with prior or active hepatic decompensation events (eg, variceal hemorrhage, ascites, or hepatic encephalopathy).
WARNINGS AND PRECAUTIONS
Hepatotoxicity: [00:01:00] Treatment-emergent elevations or worsening of liver tests have occurred. Obtain baseline liver tests and monitor during treatment; monitor also for liver-related adverse reactions and signs of hepatic decompensation. Dose reduction or treatment interruption may be considered if abnormalities occur. Permanently discontinue if persistent liver test abnormalities, clinical hepatitis upon rechallenge, or hepatic decompensation occur.
Gastrointestinal Adverse Reactions: Diarrhea and abdominal pain [00:01:30] were reported as the most common adverse reactions in patients treated with LIVMARLI. Consider reducing the dosage or interrupting treatment if a patient experiences persistent diarrhea or abdominal pain.
Fat-Soluble Vitamin (FSV) Deficiency: Obtain baseline levels and monitor during treatment. Supplement vitamins if deficiency is observed. Consider interrupting LIVMARLI if bone fractures or bleeding occur.
Risk of Propylene Glycol Toxicity (Pediatric Patients [00:02:00] Less Than 5 Years of Age): Total daily intake of propylene glycol should be considered for managing the risk of propylene glycol toxicity. Monitor patients for signs of propylene glycol toxicity. Discontinue LIVMARLI if toxicity is suspected.
[00:02:19] [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 and 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: Any level of cholestatic pruritus in Alagille syndrome deserves to be addressed. Find out how you can help your patients [00:00:30] talk about their symptoms.
Voiceover 2:
INDICATION
LIVMARLI is indicated for the treatment of cholestatic pruritus in patients who are 3 months of age and older with Alagille syndrome.
IMPORTANT SAFETY INFORMATION
CONTRAINDICATIONS
Contraindicated in patients with prior or active hepatic decompensation events (eg, variceal hemorrhage, ascites, or hepatic encephalopathy).
WARNINGS AND PRECAUTIONS
Hepatotoxicity: Treatment-emergent [00:01:00] elevations or worsening of liver tests have occurred. Obtain baseline liver tests and monitor during treatment; monitor also for liver-related adverse reactions and signs of hepatic decompensation. Dose reduction or treatment interruption may be considered if abnormalities occur. Permanently discontinue if persistent liver test abnormalities, clinical hepatitis upon rechallenge, or hepatic decompensation occur.
Gastrointestinal Adverse Reactions: Diarrhea and abdominal pain were reported [00:01:30] as the most common adverse reactions in patients treated with LIVMARLI. Consider reducing the dosage or interrupting treatment if a patient experiences persistent diarrhea or abdominal pain.
Fat-Soluble Vitamin (FSV) Deficiency: Obtain baseline levels and monitor during treatment. Supplement vitamins if deficiency is observed. Consider interrupting LIVMARLI if bone fractures or bleeding occur.
Risk of Propylene Glycol Toxicity (Pediatric Patients Less Than 5 Years of Age): [00:02:00] Total daily intake of propylene glycol should be considered for managing the risk of propylene glycol toxicity. Monitor patients for signs of propylene glycol toxicity. Discontinue LIVMARLI if toxicity is suspected.
[music]
[00:02:18] [END OF AUDIO]
The signs between the fines
Have you spotted any signals of cholestatic pruritus?4,10-12
Start the conversation
Resources to help with the discussion
A guide for health care professionals to help facilitate a better conversation based on normalization phrases you may hear from your patients.
A resource for patients to help identify common signs of cholestatic pruritus, and some that may be misinterpreted or not recognized.
