Experiences with

Ocaliva

My hepatologist has offered for me to try it since Ocaliva isn’t keeping my ALP down to a desirable level. Your thoughts?

Yesterday Robert and Mo did an hour long webinar on the impact and facts surrounding Ocaliva not being available.

I'm 44, diagnosed at 38, tried urso a couple of years ago, the side effects were hair loss and swollen ankles, stopped, didn't take anything until April this year when I started Ocaliva. Before Ocaliva ALP199, ALT 83,FIBROSCAN 5.2kPa. Thank you.

Hi everybody, I’ve just been told that I should now start ocaliva aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!

I am understanding from the comments Urso and Ocaliva has side effects of weight gain, correct? Also, the fatigue is bad in morning and evenings. But I take Tramadol to control the fatigue and joint pain. I don’t know how I would be able to function with it.

My hepatologist would like me to try it considering Ocaliva isn’t doing what it did in the first few years of taking it. I am in the process of filling out forms for IPSEN. I have no prescription insurance because I never needed it. So I’m not sure if I will be approved. Thanks

Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response to the announcement made by the European Medicines Agency (EMA) on 28th June 2024 about the future of obeticholic acid (OCA or Ocaliva) in Europe.

I can't even begin to imagine how this decision to no longer offer Ocaliva to European patients will impact their lives. Many patients take this because of not being able to tolerate Urso or being a partial responder to it. Dr.

Bezafibrates (fenofibrates in the US) have been used as well along with Ocaliva but neither of these drug groups are licensed yet. Right now they are being used in clinical trials.

In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of Ocaliva. Robert has asked everyone to write to particular people to express your concern and dissatisfaction with this decision.

I was just curious about your experiences taking a combination of udca, ocaliva 10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!

Often times, Ocaliva (another second line treatment) has greatly increased itching. PPAR drugs are sometimes used as an anti itch medication (Bezafibrate). There is increasing evidence though, that Bezafibrate can impair kidney function - it needs to be monitored closely.

No time is wasted taking nothing besides their Urso or Ocaliva. Every patient deserves equal chance of benefiting from a new drug potentially. Any thoughts on this? The lobbying of the pharmacuetical companies is crucial for this to happen. The PBC Foundation is committed to make this happen!

The IL-31, I mentioned earlier that causes the itch was increased with patients taking Ocaliva. 96% of those in the trial agreed to continue to the long term research. [u][i]The very best news in their presentation about Seladelpar was that they are hoping to have it on the market 8/14/2024!!!!

Those on Ocaliva, greater than 50% don't see an improvement. 161 people were trialed. There was a placebo group used for half of them. They saw decreased alk phos and bilirubin. 51% had decreased alk phos after 1 year. 15% had completely normal lab results.

We are emphasising two things in this letter: 1) That Obeticholic Acid, aka OCA or Ocaliva continues to have a license, even if it is still conditional, as a treatment for PBC.

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!

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!

hi everyone Can anyone help Urso has stopped working and being put onto Ocaliva. i have been on Urso since diagnosed in 2012. Not sure what to expect ?? Thank you

Has anyone noticed weight gain or not being able to lose weight since taking Ocaliva (Obeticholic Acid) please?