I am new here. Diagnosed with PBC in 2002 m... - PBC Foundation

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I am new here. Diagnosed with PBC in 2002 maybe starting Ocaliva soon.

Nicaganew
Nicaganew

Hello all,

I was diagnosed with PBC back in 2002 at the age of 21. I have been taking close to 1000 mg of urso everyday since then. Maybe 6 years into it my puritus would kick in the week before I began menstruating. Then once my menstruation began it would go away. Over the past three months the puritus has been horrendous. Just has not really subsided. After my most recent check up with my specialist she felt that the urso is no longer working. She told me about a new medication called Ocaliva. I was wondering if anyone is taking this with some details. They say this could stop my itching and lower my numbers. Has anyone had any luck with this new medication? All help is appreciated. Feel free to ask any of your own questions I will help in anyway I can.

9 Replies
oldestnewest

i really hope the new medication works for you.... :)

Nicaganew
Nicaganew in reply to Becca75

Thank you Becca75!

I take it. I itched after I was on it for 2 weeks. After 3 months being on it the itching has gone away. If I eat sweets I itch. It's so weird. But that has always been the case. My doctor wants my numbers to go down.

Nicaganew
Nicaganew in reply to Pea1234

That is awesome! I hope that still continues for you! It is so random what causes the itching. How do you contain your itching? I have been taking Benedryl, using Sarna Lotion and taking Aloe Vera baths.On top of keeping my nails short. I am running out of options that are working.

I take Ocaliva and it works to bring my liver enzymes down tremendously! The downside for me is that is causes intense pruritis. The doctor cut my dose down to 5mg every other day and I also take a week off once a month to give my skin a break from the itch. Even with the lowered dosing my enzymes have continued to lower so it definitely works. I wish you well!!

Nicaganew
Nicaganew in reply to Texas-Amy

How do you contain the itching? I have been taking Benedryl, using Sarna Lotion and taking Aloe Vera baths.On top of keeping my nails short. I am running out of options that are working.I am glad to hear that the numbers are down. Gives me hope.

Texas-Amy
Texas-Amy in reply to Nicaganew

The doctor prescribed a prescription medication called atarax. It helped a little but not enough. So then he prescribed Cholestramine powder (questran) and it helps for sure. it works by binding the bile acid which I believe is what causes the itching. Mine was so bad I looked like I had chicken pox. I still have flare ups but it's manageable now. I would ask your doctor about cholestramine.

Nicaganew
Nicaganew in reply to Texas-Amy

Thank you so much!

Texas-Amy
Texas-Amy in reply to Nicaganew

You're welcome!!! 😊

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