OCALIVA

[iagra]

Hello!

Anyone is taking OCALIVA in addition to Ursodiol to lower ALP?

Does it work? Do you have any side-effects? How long have you been taking it?

My ALP jump quite a bit and my doctor mentioned OCALIVA.

I don't like what I read about the side-effects.

I'd appreciate your input.

Thanks!

[gwillistexas]

I sent a reply but I don’t see it. When I was diagnosed in 2017 I was put on URSO and had a bad reaction so I was taken off and put on ocaliva. I’ve been on it since then and never had one side effect. It lowered my Alk phos quickly. I’d say give it a try. Sending you the best in your decision. 😊

[iagra in reply to gwillistexas]

Thank you so much for your input. It's very helpful. Best to you as well!

[gwillistexas in reply to iagra]

You’re welcome 😊. Let us hear how things go.

[IAmTheGlue]

I am on both. I have been for years. I am a non-responder. My numbers are still high. My hep from the Mayo Clinic recently tripled my prednisone to try to bring the inflammation down.

I do have PBC/PSC overlap and I’m in compensated cirrhosis, so you may have better results.

I was also afraid to take the Ocaliva, black box warning and all… But, I can’t say if I suffer any side effects. I take a significant amount of medications and you know I’m 6 years older than when I was diagnosed, so some maybe side effects, some may be getting older.

I hope the medicine works well for you. Even if you take you meds and your numbers don’t fall into place, there is supposed to be a protective effect on the liver just for taking the Urso. You don’t have to have perfect numbers to get those results.

Best wishes. Stay strong.

[Floridachick in reply to IAmTheGlue]

I am also treated at Mayo - in Jacksonville. Who is your Doctor? Mine is Maria Yataco.

[IAmTheGlue in reply to Floridachick]

I see Dr Raj (Satyanarayana). I love him. Such a great, caring Dr.

[gillrich]

Can also get accurate and upto date info on all things pbc Pbcfoundation.org.uk

[Floridachick]

I was diagnosed in 2014 - used Urso for 5 years and ALP was as high as 800. Went to Mayo Clinic in 2019 - added 5mg Ocaliva with Urso. In 4 years, ALP is now 232. You want to get the inflammation reduced- it can cause damage - compensated cirrhosis.

Best of luck!

[Biscuitsntea]

I was diagnosed 15 years ago started on Urso and my ALP normalized. Then about 5-6 yrs ago ALP started rising again while still on Urso. Was started on Ocaliva 5mg then increased to 10mg. ALP improved but never normalized. Luckily I've never had side effects from Ocaliva. It is a yearly battle with my insurance to get it pre-approved though.

[iagra in reply to Biscuitsntea]

Thank you for your reply! What does it take to get the approval? Do you get the insurance discount every time, or there are years, when you don't? I heard, it costs thousands of dollars.