Obeticholic Acid

[cavi]

Hi all are many of you taking this medication if so any info will be of great help Consultant wants me to try this already taking Urso not seeing Consultant at Q E until Dec due to all the cancelled appointments he just mentioned it to me in my clinic telephone call from him last week just wondered in what way it helps advanced liver cirrhosis better than Urso Many thanks

[butterflyEi]

I see no one has been able to answer your question, I wonder if a direct chat with someone at the PBC Foundation would be helpful to you. They are not able to give medical advice per se but they can generally give you an overall picture I believe.

[gwillistexas]

Cavi, I have been taking ocaliva 3 years. It was my only choice as I was allergic to URSO. I have had no problems with it and it has kept my numbers within normal range. The drug is still in clinical trials and I don’t think they have determined if it prolongs our lives or not. You can sign up to receive emails from Intercept and be informed of their findings.

[Camp_Host in reply to gwillistexas]

My doc is wanting to put me on this med along with Urso. May I ask how you afford it? The price is ridiculous! I am only being prescribed 1 pill per week and the monthly cost (4 pills) is outrageous!! It’s hard to put a cost on your health, but that is crazy! Do you know if there are any coupons/discounts or anything to help with the burden of the cost?

[gwillistexas in reply to Camp_Host]

Camp_Host...yes it is extremely expensive. When my dr prescribed it, he contacted Interconnect Services, and they contacted me. They want your household income, and couple other questions. I expected to pay for it with a little help but they said no charge. Your dr surely knows the cost of it so ask him to contact them. It is a form you fill out and it may take about a week to get your approval.

[Camp_Host in reply to gwillistexas]

Thanks for the info! I will definitely check into it. 👍

[gwillistexas in reply to Camp_Host]

Please do. You’re welcome 😊

[Annac]

Hi Cavi, So I have been on Urso for 13 years, then last year I felt there was a blip. When I attended my Hepatology clinic. about 6 months ago, and had blood tests the tests showed the Alk Phosaphate numbers were very very high. I was put on Obetacholic Acid (Ocaliva)alongside the Urso.

I believe this is still on trial. I get medication couriered to me as the hospital said GP would not pay what these cost !!! During Corona Virus lockdown The hospital has been phoning me for update. I started on 5mg a day which was fine the Blood result came down to 199

which I was told was good - going in the right direction but I believe 129 is what we are aiming for. so they increased to 10mg a day - the side effect is itching. I never had itching before but now it is bad a certain times of the day. I reduced to every other day to work it into my system and have in the last week gone back up to every day. Itching has not improved but has not got worse.

So in part answer to your question. I am taking it with Urso. I take 250 Urso two morning and evening and one midday.

I have not had blood test since increase to 10mg so cannot say whether it has improved the Alkaline Phosaphate.

Ask your consultant why he wants you on Obetacholic Acid. They know what they are doing

but you might want to know as well.

Take Care. I hope this has helped. AnnaC x

[powerful-moose-uk]

Hello Cavi. I take Urso and have been on it for 20 years. I agreed to trial Obetacholic (Ocaliva)in October 2018 but unfortunately it caused severe itching and I even broke out in itchy spots all over ( I had never suffered from itching before). I tried to persevere thinking it might settle (and was very conscious of the cost and opportunity) and had a miserable few months so was taken off it in March 2019. Tests showed only minimal improvement, not enough to warrant continuing -thank goodness -I guess it’s not for everyone. I don’t think there are any conclusive results yet as to the success of the trial in general.