Ocaliva itching permanent?: Has anyone taken... - PBC Foundation

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Ocaliva itching permanent?

Rimeru profile image
2 Replies

Has anyone taken Ocaliva and took it and had gotten worsening itch? If so, when you stopped, did the itch lessen or is that side effect permanent?

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Rimeru
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Q8Cooper profile image
Q8Cooper

I have been on Ocaliva and was one of the first patients to receive it. I have episodes of "flare up" severe itching that may last two to three weeks. Usually what sets it off is a change in medication (sometimes I have to go for days with out Ocaliva and then start up again, while my insurance gets its act together. This is usually what sets off a flare up. There are some things you can try to help. There is a medication called Cholestyramine that you mix with juice and taste like sand but it can help. I have tried benadril. It makes me sleepy but doesn't help the itch. I find steroid cream helpful. My doc has me mix it half and half with skin lotion as I have to coat my entire body. If you have scratched until your skin is inflamed cool packs help reduce the inflamation thus reduce the itching. Also pay particular attention to dry skin and stay ahead of it.

If you are new to the medication it may take a couple or three months for your system to adjust to it, In my caseeled the skin off my feet and scarred myself by scratching the same spots. I found this type of "beg for mercy itching" can be managed and you can learn how to shorten how long these flare ups last . At least that has been my experience. Good luck to you and hang in there!

Rimeru profile image
Rimeru in reply toQ8Cooper

Thanks for the response! This question was actually for my mother who's had itching prior to taking Ocaliva. She usually gets the itch at night but since taking Ocaliva she's been itching more than usual and has lingered on into day time which never happens, she is losing sleep over it which makes me worried. I believe she did try Cholestyramine lite and I don't think it worked for her as with other medications to treat her itchiness. The first four days she was on Ocaliva she had no side-effects and then I guess it finally kicked in and thats when her itching got worse, currently on day 15 of taking it. Hopefully it reduces over time? Anyway thanks for the reply nevertheless.

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