PBC diagnosed aug 2013. At age 30
Started Ocaliva 9/4/18
Hoping this new medication along with the urso helps slow things down for me. My family....other half and out 2 girls age 6 and 8 mean the world to me and just for a little while would like to feel like me
Anyone on ocaliva please feel free to share experiences or ask me & more than happy to try to help and share too.
Alison x
G’morning. I also take Ocaliva, as I’m not able to take Urso. It has worked great for me so far. I’ve been taking it since October last year. No side effects & no hair loss. Hope you will have good results. 😊
Awesome to hear you have no side effects 
I’m only 4 weeks in and I’ve started to itch at times, but hoping with all I’ve got it helps my liver. I’ll suffer the itch and find ways of coping and distracting myself from it.
Wishing you well xxx
Yes, the pharmacist actually called to discuss possible side effects. Said keep Benadryl close by. I’m very thankful & blessed so far. Well wishes to you as well🦋
Hi Alison, I am stage 2 since 2014. Only taking Urso. I have no problems with Urso. I have fatty liver too and had to change my diet a lot. I am so much better since I changed my diet. Fat free, sugar free, Lactose free & gluten free now. The pain in my bones are gone, no more itching, constipation/diarrhea. I am feeling so much better 4 yrs later, just because I changed my diet and Urso! I feel very lucky!
I have taken the 5mg ,but now they have up it to 10. I should have asked why but didn't. My blood tests are okay.
I have a couple of comments to add so not replying to anyone specific.
Some patients on OCA do experience itch, but the anecdotal evidence is that this usually normalises: sometimes on meds, sometimes without. Because OCA is a different bile salt to Urso, the itch med of choice by the top specialists is usually rifampicin (or rifampin in the US), as opposed to Cholestyramine when taking Urso.
The clinical trials showed that 10mg were the most effective but what they do is start you on 5mg; if you tolerate well with no side-effects (usually itch) or the side effects have normalised, then they will take you up to 10mg. This is the way recommended by EMA, FDA, etc, I believe.
OCA has been a wonderful gamechanger for those who do not respond to Urso. That said, for those who do not benefit from OCA there are a number of compounds on trial, that are all showing great potential of being VERY successful in PBC.
So, even if OCA is not the answer, there are still opportunities to try other options.
Thank you for the comment. I had bloods done 4 days on ocaliva with my combined 1500mg urso and wow. Fingers crossed the levels continue to move in the right day direction when I have more bloods done start of next month.
For someone who has rapidly moved to child’s A cirrhosis I hope oca can slow done the already quick moving PBC I have
Prayers🙏🏻😊
I guess my question would be this, and you may not know, but if blood levels are good & fibroscan shows good results on 5 mg, why they would increase to 10 mg. Just a thought🦋
In the clinical trials, 10mg was the "optimal dose", which means had the greatest effect with the least amount of side-effects. So, if 5mg is tolerated, the thinking is going up to 10mg is going to have a greater effect on liver biochemistry.
Do bear in mind, we are talking 5/10mg as opposed to hundreds of mg taken of Urso. Also, there is no difference in cost between 5 and 10mg, so it's not about making more money.
Thank you!🦋
Elevated alp
Starting Ocaliva
Ocaliva UK
2 MONTHS On Ocaliva 
Experiences of Ocaliva
Ocaliva
