Thanks for someone bringing this to my attention in her recent post. I think this really enforces the need for close monitoring of our liver enzymes - every 3 - 6 months, as well as continued care from a PBC knowledgeable physician.
If you are taking Ocaliva, please have a discussion with your doctor about continued use. Each of us may have PBC at different stages. We have to keep in mind that on any drug we take for our PBC that the disease can sometimes still progress to cirrhosis and other advanced liver disease conditions. This can occur even on Urso if the disease progresses despite treatment. There is no guarantee that taking medication will keep PBC from progressing to any degree.
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I have been on OCA (urso and bezafibrate as well) for a few years now. I do have cirrhosis but no issues or symptoms. I asked my Dr about OCA when these articles first came out and she said they are closely monitoring information on this issue but for now they are still ok with OCA. I’m in Canada. Blood work and ultrasounds on a regular basis for me. All good for me so it’s not across the board its individual reactions- this seems to be an individual specific disease.
Glad you’re being closely monitored. My hepatologist is taking no chances. He is putting his patients on another drug to try and keep them on the safe side. If the risk is high enough for the FDA to issue the warning, especially because of patients who otherwise were doing fine and developed cirrhosis while taking it and some lost their life, I’m following my drs advice.
so did I which was why I contacted my hep dr. They say they are watching closely how the information evolves. My recent ultrasound was actually improved.
Both Elafibranor and Seladelpar (PPAR-@ agonists) have recently been approved for use by PBC and PBC/AIH patients, on a rare disease « fast track » approval by the FDA. Not sure of approval outside the U.S.
I’ve had mixed results after 3 months on Iqirvo (elafibrinor from Ipsen Labs). Still hoping this is the right track.
I started Seladelpar last week. So far no side effects. My hep had previously scheduled labs in May before we decided we would try this drug. I assume he isn’t ordering labs sooner although I wish he would. Good luck!
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