PBC Foundation

Itchy on Ocaliva - it comes and it goes?

Hi everyone! I’ve been on ocaliva for seven weeks and Urso for seven months. I was slightly itchy on Urso but not a big deal. Week 2 on ocaliva i was extremely itchy, then it subsided and now i am crazy itchy again. Anyone else experienced similar? I am able to tolarate major itching so long that my liver enzymes are improving and maybe sweat her weather is a factor too ... just wondering if anyone had this experience. This site gives me a great deal of comfort and advice and I’m SO thankful to each and every one of you!! Xox!!

6 Replies

No itch here fromOcaliva, so far.


I've been on Urso for 4yrs and Ocaliva for 5 months. The itching increased with Ocaliva. For me, the intensity comes and goes in waves. Since Ocaliva is still in trial phase and listed as a specialty drug, be sure to let your doctor know about the itching as well as updating your Rx profile when refilling the med. Benadryl is my go-to 🙂

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I had itching so bad that I was hospitalized. That being sad I didn’t realize I was supposed to stay urso, so I’m still unsure whether it was because my numbers shot up so high Or because of the Ocaliva. I’m sure it was a little bit of both. Good luck I wish I could take it

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When I was first put on Ocaliva, the pharmacist from So Dakota called me (that’s where mine is shipped from). He said itching is a very common side effect & to keep Benadryl on hand. So far I’ve been fortunate with no itch. Been on it 4 months. Good luck to you.


Thanks everyone for your responses. I did check with my doctor who called in a prescription for me to help with the itch that I did not take. But about four days ago the itch subsided on its own. So odd.


I’m laying awake itching!!!!!!! Aaaargh. Actually crying 😭 as it’s so itchy I just want to sleep.

This is week 4 for me on Ocalivia and I was all smug thinking I wasn’t itching. Started last week it comes and goes.

On 5mg ocaliva & 1500mg urso. PBC only 34 last biopsy showed had progressed rapidly to stage A child’s cirrhosis WTH?!

No other symptoms little tired nothing. But that’s parked for now but this itch!!

Already had bloods done and lowest levels for 4 years. One went from 1287 to 500....don’t ask my which I try not to ask too many specifics as I’ll likely google

Anything help you with itching? Asides anti histamine? X


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