I’m almost a little reluctant to ask this question, but is anyone taking this new drug? 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
nejm.org/doi/full/10.1056/N... taking any medication for the first time can be scary.... the PBC community is thankful several new drugs are being approved as second and third line treatment. If this works, it could be the pill that truly saves you. Same as when we take Urso or Ocaliva - or any drug - for the first time, we don't know until we try. I hope this article helps you decide.
Thank you. Yes it’s scary. I had a horrible allergic reaction to URSO and had no issues with ocaliva. My drs nurse sent the link to read about Elafibranor. I slowly lost weight with ocaliva and a lot of muscle. But as you say, it’s worth a try. I appreciate you sharing the link.
I think I read that this company still has to do drug trials. Maybe check around and see if there is anyone doing them in your area. I’m pretty sure it’s going to be quite expensive with no insurance
Pam
I was fortunate with ocaliva. Even though I have a moderate income but no prescription plan I got it at no charge. But Intercept changed the Patient Assistance Program to a different group and they require everyone in the PAP apply for Medicaid. I refuse to do that. They said the purpose is to be denied so patients can continue receiving ocaliva. I’m in a don’t know what to do situation. Ocaliva was or is over $8,000 a month. I know this one will be very expensive because it’s a specialized drug. 🤷♀️
You have to get Medicaid? That is ridiculous. Even if you had a prescription plan you probably still wouldn’t qualify. I don’t know how other people are getting it. I have a prescription plan and it isn’t likely that I would be able to afford it either. I’m sorry you have to be worrying about this.
Pam
Yes snd I understand there are people who need Medicaid. I do not. I did a little research. There is a Medicare-Medicaid dual plan but if you take that you lose your supplemental insurance. I have a great supplement policy and I will not let go of it for that. Makes me sick.
Same. I like my supplemental too
I would like for these pharmaceutical companies to explain how they expect patients to get the medication at such a high cost. Some need it but if you can’t get it what’s the use? Seems they’re making it next to impossible. Even if I’m approved on the copay assistance it could cost hundreds of dollars, from what read about prescription plans. Can’t do that either.
I don’t get it either. It’s definitely some kind of a racket.
I’m not sure what it is but it doesn’t seem to work in the best interest of patients who need the drug. I sent my first form in today. I’ll let you know…
Please do!
Good morning. I did get approved. Little nervous about taking it but we shall see.
Great news! Please keep us posted on how it’s going and how you’re doing!
Pam
I will.
There are 2 new drugs to address pbc, seladelpar is the other. My hepatologist said he is no longer prescribing Ocaliva to any patients unless they are already on it. He says the 2 new meds are superior to Ocaliva.
Ocaliva isn’t working in my best interest anymore and this is why my hep is trying to get me approved for Elafibranor. I will continue Ocaliva until we know.
Good Luck!
New diagnosis - early stage PBC
Increased urination with urso
Non -responder to ursodeoxycholic acid 
Used Ursofalk for too long but...
Am I rejecting Urso 
