Urso nonresponder

[Wocket]

What drugs are people on if they aren’t an Urso responder and are they helping at all?

[Ballymahon2]

Ocaliva

[Candy12]

Good question, it will be interesting to see replies. I’am not an any yet but I start a bazafibrate on Monday after deciding to go with it instead of Ocaliva.

[Wocket in reply to Candy12]

That’s just what’s happening to me. Hope Bezafibrates is good for both of us.

[Buddy2017]

I can only tolerate 2 Urso capsules a day , I also refused Ocaliva and started on Bezafibrates 3 weeks ago , I won't know if they've helped until I see my Consultant in September.

[Wocket in reply to Buddy2017]

I’m starting Benzafibrate Monday so I hope it’s good for both of us.

[Enaa56 in reply to Buddy2017]

Why did you refuse Ocaliva?

[Buddy2017 in reply to Enaa56]

I've just seen the side effects 2 of my friends have had and my Consultant didn't really want me to take it either......everyone is different though and it works for many .....I am one of the lucky ones and have no symptoms and I didn't really want any

[Candy12 in reply to Enaa56]

I made the decision with my doctors not to take it at this time. I don’t currently itch and if I do it’s mild and only when I get too warm , I’am still a partial responder to URSO as well so I dont want to risk the itch at the moment. My doctor said she’d prescribe it if I wanted it, but she had not seen any positive results from it and wanted to try bezafibrate first. But she would only do that if my cholesterol was high, otherwise it’s off label. ( but it was high so I pick up my prescription on Monday)

[Enaa56 in reply to Candy12]

I’m a partial responder too with Ursofalk. My ALP levels in the first year dropped to just above normal level but seem to be dormant at present. My Hepatologist is checking on my blood levels in three months time and said Ocaliva may be an option to use alongside Ursofalk. That’s a difficult decision to address as I have no symptoms, only slight fatigue occasionally!

[LindaVillanova]

Oca and likely a trial for fibrates in a few months. Oca did help but doc is still shooting for normal numbers.

[Katiagreece]

Hi, I was diagnosed in 2014 but think have had PBC for many years.

I was prescribed Urso but had very slow response bringing my blood levels down.

In 2016 my Professor added Bezalip, one a day. Ever since all my bloods have gone back to normal and I’m doing really well.

I have had 3 Fibroscans , the first was 11.6

Before taking the Bezalip and then 7.6 last year and just had another one which was 6.9. Amazing results as I didn’t think the levels could improve.

Fingers crossed 🤞 we can all find a way to keep this disease at bay.