Is anyone on the new drug Ocaliva?

[Pea1234]

I went to my doctor today and he was very excited to tell me about this new drug Ocaliva for PBC that got FDA approved at the end of May and available since June. He wants my ALP numbers to go down more so I will be taking 2 URSO pills + 1 Ocaliva 5mg pill per day. I was taking 3 URSOs per day. The side affects are fatigue and itchiness. Although the percentages for these side effects are low. Is anyone here on it?

[Hidden]

Hello Pea1234.

I am in the UK and this new Ocaliva you have mentioned (or OCA as it is probably going to be referred to as too) is only currently being marketed in the US. I was reading about it being pushed through for marketing not so long ago and that it might be another 18mths or so before it is available in the UK.

I did keep abreast of the clinical trials and being an itcher with PBC (how I got diagnosed in 2010) I am dubious for myself with this new drug due to this apparently being one of it seems a common side effect. My itching has altered somewhat with taking urso for nearly 6yrs but not vanished and I am not so sure with this new drug if I was ever offered it (though I will get to that when and if it occurs), I don't fancy the itching going back to how it used to be, 24 hours a day (it now seems more confined to night time).

I believe from what I read was that patients start on 5mgs daily and then they are taken up to 10mgs and that is the max dose. Well that is how I read it. If you check on this site for about 10days or less someone posted on this new drug and it mentioned clinical trials. If you have any problem finding it and want to read, message me and I'll see if I can find the link that I did copy to send you.

[Karaliz]

Hi Pea. I've been on OCA for 4 years as part of the phase 3 trial. I take 1000mg Urso - although classed as a non responder - plus 10 mg OCA. Zero side effects.

Hope you find the same !

Cheers

Karaliz( Australia)

[kgohn]

Just started this last week. I'm an incomplete responder to URSO. I take 6 URSO per day and now 1 Ocaliva. My ALP has been close to 400 for the past 2 years. You also might want to check that you are on the max URSO dose as well. When I was trying to join a trial last year, the researchers discovered I wasn't at the max dose, and I was bumped up on my URSO. It is based on Your weight. 10-15 mg per Kg per day. Of course this is all through your doctor, but the research doctors sent me the studies to share with my normal hepatologist.

[babs29]

Hi am a 52 I was diagnosed in 2013 my enzymes are very high My Dr said I am not responding to the Urso 1000mg. I started the Ocaliva 10days ago I get sick to my stomach about 40 min. To an hour After taking it I also have itchy rash the rash goes away after I take Benadryl. The itching has gotten even worse now that I started OCA. I have an upset stomach bloated tired all the time I do not want to stop taking it because it is the only thing that might help but this is no way to live either I am in bed almost all day because I feel so bad. I do not know f it is just my body I am allergic to so many medications now. I also have RA Fibromyalgia Epilepsy .