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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
June 12
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A myPBCteam Member

The same for me. Everything u said.

June 20
A myPBCteam Member

I've been on Iqirvo for 3 months now, my numbers improved dramatically. My ALP came down to normal after 30 days for the first time in 6 years. The problem however, is getting insurance approval. It was very stressful and time consuming. I had to go through a specialty pharmacy and get a letter of medical necessity sent from my doctor to the pharmacy. It is a very expensive medication, totaling 12 thousand dollars a month. My insurance pays $9000 and I had to sign up with the manufacturer through IPSENCARES and they pay the remainder, so, for now I haven't paid anything out of pocket. I am not sure how that will progress to the end of the year because they only allowed a 20,000 amount from IPSENCARES and that will run out, then I am qualified under a separate program, but I can't remember the name of it. Also, they do not work with any government insurance, so at the end of the year I will retire and will lose the insurance I have so I have to find out what kind of advantage Medicare plan or supplemental plan will work with that criteria. I have knots in my stomach about it all, but I want to stay on the medication because it is helping me. I wish you the best on your journey, and hope the medicine helps you also.

June 12
myPBCteam

Good morning! Iqirvo (elafibranor) is one of the newer FDA-approved second-line treatments for PBC, approved in June 2024. It works by targeting pathways that cause liver inflammation and helps reduce bile acid production, making bile acids less harmful to the liver.

Here's what others have generally experienced: On Show Full Answer

Good morning! Iqirvo (elafibranor) is one of the newer FDA-approved second-line treatments for PBC, approved in June 2024. It works by targeting pathways that cause liver inflammation and helps reduce bile acid production, making bile acids less harmful to the liver.

Here's what others have generally experienced: On itching relief:
- In clinical trials, it significantly reduced itching severity for many people
- Among those who had been itching 6+ hours a day, 58% reported less than 6 hours of itching per day after taking it

How doctors track if it's working:
- Your doctor will monitor your ALP and bilirubin levels through blood tests
- Symptom improvements, especially itching and fatigue, are also tracked

Possible side effects to be aware of:
- Weight gain
- Hair loss
- Diarrhea

It can be taken alongside UDCA or on its own if UDCA isn't tolerated. As with any medication, everyone's experience can differ, so keeping your healthcare team updated on how you're feeling is really important.

More long-term data is still being gathered, so staying in close contact with your doctor will help ensure it's the right fit for you. ๐Ÿ˜Š

June 12

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