ocaliva

[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

[Hidden]

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 in reply to Hidden]

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

[gwillistexas]

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.

[gwillistexas]

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

[PBCCarol]

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

[gwillistexas in reply to PBCCarol]

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

[PBCCarol in reply to gwillistexas]

Yes, only 5 mgs

[cavi]

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

[JaneEyre55]

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 in reply to JaneEyre55]

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

[Karaliz]

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 in reply to Karaliz]

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

[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 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 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 in reply to Karaliz]

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

[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 in reply to cavi]

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

Take care

[Nikkipinch]

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.

[Rimeru in reply to Nikkipinch]

how long did you take Ocaliva until the side effects of itching wore off? and what other meds did you take?

[Blessedbyou]

Hello. I am new in this forum. Have had PBC for 14 years and have cirrhosis now and just switched doctors. The new doctor prescribed ocaliva and lactulose. Pardon my ignorance but is ocaliva and oclavia de same thing?

[gwillistexas in reply to Blessedbyou]

I’ve not heard of it so I tried to research. It only brings up Ocaliva. That is what I take.

[Blessedbyou]

Okay. Thank you. So maybe oclavia is just a misspell

[gwillistexas in reply to Blessedbyou]

You’re welcome. Heck I didn’t even pronounce it correct in the beginning, lol!

[DonnaBoll Administrator]

In 2021, the pharmacuetical company making Ocaliva (Intercept) stated someone with advanced liver disease or cirrhosis should not take Ocaliva. This information was not available when Ocaliva was first introduced by the company. Please have a conversation with your doctor if this is the case - and read all you can from reputable sources (FDA, NIH ) regarding this finding. Several articles are found searching "iOcaliva and cirrhosis of the liver".