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A myPBCteam Member asked a question 💭
Melbourne, FL

New to this site and trying to figure things out. I am in my first month of taking these Rx's and wanted to know if anyone else took either one and what their experience has been. One is for my PBC (Iqirvo) and the other is for my Hepatic encephalopathy. I appreciate any feedback. Thanks.

June 2
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Answer Summary

Members new to Iqirvo and Xifaxin for PBC and hepatic encephalopathy received warm, experience-based support from others managing the same... Read more

Members new to Iqirvo and Xifaxin for PBC and hepatic encephalopathy received warm, experience-based support from others managing the same conditions. Several members shared that Iqirvo helped lower their liver numbers within weeks, though some noted side effects like nausea, weight gain, and in one case, severe vomiting that led to switching to the much more affordable generic fenofibrate. A recurring theme was the importance of staying hydrated, asking doctors direct questions, researching PBC thoroughly, and knowing that financial assistance programs and Medicare Advantage plans can help cover the high cost of these medications.

A myPBCteam Member

Thank you. I won't find out anything until the end of this month when I see my Hepatologist. I am on a Medicare advantage plan. They approved Iqirvo for me, but my cost with insurance was around $1600 (without is $11,000, ridiculous right?). My plan has a Catastrophic Coverage stage where after you meet the deductible for the year ($2100), your cost for Rx's is zero for the rest of that year. There are programs that help with the cost. That's why I can get the Iqirvo and Xifaxin now. Thank you for your answer and I hope you can find a plan for Medicare that will cover the Rx for you.

June 5
A myPBCteam Member

Yes I am on Iqirvo and am so far having good luck with it. As with any meds, they take time for your body to get adjusted to. I had to learn to listen to my body and what I was eating, learn what you can tolerate and what you cannot. We are all different and it is certainly a learning curve. I had issues when I first started taking Urso and Iqirvo. I have adjusted to both and still am on them both. Find a good dr. that knows about PBC Good luck to you

June 4
A myPBCteam Member

Hi, I have been on Iqirvo. I took it for approximately 6 months with great results, but then started vomiting profusely every night after taking it. I had to stop. My doctor then placed me on an older generic called fenofibrate in addition to my urso. My alp has been the lowest it has been in years! Normal range at 89. My alt did elevate slightly but not significantly which is to be expected. I am very happy with this treatment.

June 9
A myPBCteam Member

Thank you for your reply. My HE is probably the thing I deal with the most. Have had some episodes of confusion and memory, but nothing that would be critical. I am anxious to find out if my ammonia level has gone down since I started taking the Xifaxin. I recently ordered a book, received it, and have started reading it. Someone on this board suggested getting "PBC The Definitive Guide for Patients with PBC:2026 Edition by David Jones." It has been enlightening and I better understand what is going on with me. It has been about a year since I found out about my liver and was told I would need to have a transplant eventually. Then the PBC and Celiac's diagnoses came about a month after that. Good days and some not so good days. I just take it one day at a time. Thanks for the advice and I wish you the best in your own journey. DG

June 6
A myPBCteam Member

I am on Iqirvo for 3 months now. My numbers went down significantly. I am due to go back to my liver specialist in July, hoping that I will continue doing well. But, it is a very expensive medication and I will be losing my health insurance at the end of December when I retire. I haven't been able to find out if I can continue once I get on Medicare.

June 5

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A myPBCteam Member asked a question 💭
Maine, NY

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