Ocaliva side effects does it improve?

[AB12]

Interested to understand if anybody has had side effects taking Ocaliva. I am Urso non responder stage 4 and started Ocaliva a week ago. 3 days into starting 5mg a day severe itching literally from head to soles of my feet plus feeling hot and last 4 nights slept 1 to 2 hrs per night because of the intense itching. Prior to taking Ocaliva no itching. I know this is called out as a side effect was surprised how quickly this happened and impact it is having and would love to know if anybody else has had similiar reaction and what happened? My Hep consultant has been excellent and has sent me colestyramine and some antihistamines which I will start tomorrow when I am back home.....again anybody who has had a reaction did colestyramine work. Thank you in advanced Annie

[gwillistexas]

Hi there. I have been on Oclavia a month & so far no side effects. Sorry you’re itching to that degree. It is in fact a top of the list side effect.

[PBCRobert Partner]

Hi,

First off, it is great that you now have a secondline therapy that will slow down PBC progression and hopefully lead to normal life expectancy.

As with Urso, there is no uniform response to OCA, and this includes side-effects. I have had direct contact with many patients on OCA.

Some don't itch at all. Some itch at the beginning, then normalise without medication. Some need medication to manage the itch. Many clinicians will look at rifampicin for the itch other than cholestyramine, when the itch is linked with OCA. (I can't remember the technical reason but I remembered it making sense when I heard it)

Hopefully the cholestyramine will help, for all it may not be instant. Have you been told to take it first thing in the morning, just before and after breakfast, and away from all your other meds? This is the way that is generally recommended for PBC patients with itch.

Yours,

Robert.

[AB12 in reply to PBCRobert]

Thank you for your advice on the phone

[mamma261]

I also had severe itching, Doctor gave me cholestyramine, powder and it really helps took away the itching. It does not taste very well and I found best thing to mix it with is orange juice. Anything else and it doesn't mix well and unbearable taste.

[AB12 in reply to mamma261]

Thanks I have taken with fruit juice too this morning. Good to hear severe itching

[AB12]

How long did you take cholestyramine before the itching stopped?

[mamma261]

it stopped for me after just 1 or 2 doses