ocaliva: Hi just wanted to ask if any one is... - PBC Foundation

PBC Foundation

8,212 members6,980 posts

ocaliva

cavi
cavi

Hi just wanted to ask if any one is taking ocaliva and already got cirrhosis of the liver i didnt think it was to be taken once pbc was advanced to this stage really need to know and if any one taking it with cirrhosis how you doing taking it many thanks

19 Replies
oldestnewest

Hi cavi

I was told that I was compensated end of last year and that’s the same time I was put on ocaliva . I wasn’t out on because I was compensated but because my numbers were still high and increasing when only taking Urso. I take ocaliva,Urso and immunosuppressants . My numbers still not down at where they would like but have came down a bit.

cavi
cavi in reply to Angel46

Hi thanks for your reply what dose did you start on thanks

Good Morning. Ocaliva is all I have taken. I have no cirrhosis but if you will read the drug facts, I think you may be right.

And it may depend if you’re compensated or not.

The dosage is lower for patients with cirrhosis- only once a week

I did look back at my drug info and that is what I found also. I think 5mg?

Yes, only 5 mgs

Thanks for reply i have got cirrhosis and been put on 5mg per day along with 1000mg Urso per day might ring consultant and check thank you

I have been on Ocaliva 10mg for over 3 years. I was originally put on it to reduce my ALK PH levels which were sky high at the time, they are now normal and continue to take it daily. I have had PBC/AIH for 10 years. I am also on Ursodiol, Azathioprine and Cholestyramine, all of which I tolerate well.

cavi
cavi in reply to JaneEyre55

Hi thanks for your reply what stage are you at and have you got cirrhosis of the liver many thanks

Hi Cavi

I have had PBC for 17 years, progressed to cirrhosis 7 or 8 years ago. I have been taking 10mgs OCA daily for 6 years and my consultant believes it stopped my liver failing. My LFTs were skyrocketing , my Albumin was dropping and I felt so appalling my husband was scraping me up off the floor after work. Although I obviously still have widespread cirrhosis, my LFTs are much improved and I overall feel quite good - work as a nurse/ big family.

Those with compensated cirrhosis ( my situation ) are not at risk taking OCA ... once cirrhosis becomes decompensated however there appear to be concerns with taking OCA as indicated in study findings and accompanying literature.

Hope this is of some use to you.

Karaliz

gwillistexas
gwillistexas in reply to Karaliz

Always good to hear from you. Happy you are doing well 😊🦋

Karaliz
Karaliz in reply to gwillistexas

Thanks so much Gail - I only look at the forum now and then but do really hope you are travelling as well as you can.

Best wishes

Karen

gwillistexas
gwillistexas in reply to Karaliz

You’re so welcome Karaliz. You are a very busy lady. Just please pop in every now and then, and let us know how you’re doing. 😊🦋

Karaliz
Karaliz in reply to gwillistexas

Thanks so much Gail - it’s been a year we will never forget hasn’t it !

Take care of yourself

Karen 🌺🌸

gwillistexas
gwillistexas in reply to Karaliz

Yes it has. Stay safe and take care🙏🏻🦋

cavi
cavi in reply to Karaliz

H thanks for the reply can you remember if you had any side affects when starting OCA when diagnosed 8 years ago itch was unbearable Urso really helped with bloods and itch now i got the itch back terrible been taking 5mg OCA for one month along with 1000mg Urso

Karaliz
Karaliz in reply to cavi

Zero side effects from OCA and none from Urso which I do still take.

Take care

Hi, I have cirrhosis of the liver and I'm taking 5mg once a day of Obeticholic acid and 750mg Urso, I was put on Obeticholic because my figures were high with Urso, my consultant wants me on 10mg daily but is increasing it slowly, initially I was having extreme itching which apparently Obeticholic can cause as a side effect, so not sure if its Pbc itching or meds, but lately have felt better and itching is getting less, so hopefully they are helping.

You may also like...