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mahdi123 (@mahdi123)

Primary Biliary Cholangitis and Autoimmune Hepatitis

Transplants | Last Active: Oct 3, 2021 | Replies (72)

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@rosemarya

Hi, Mahdi. Welcome to Connect. Mayo Clinic Connect is an online community where you can share your experiences and find support from people like you. I would like to help you. Would you share what brought you to Connect? What question do you have about Primary Biliary Cholangitis or Autoimmune Hepatitis.

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Replies to "Hi, Mahdi. Welcome to Connect. Mayo Clinic Connect is an online community where you can share..."

Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.

Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.

Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.

I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.

I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.

My MELD score is only 9, or was 9 the last time I checked.

How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.

Any words of wisdom? What’s the next step for me.