Urso: I am newly diagnosed and my doctor told... - PBC Foundation

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Urso

Mary2017
Mary2017

I am newly diagnosed and my doctor told me the medication that they use to prescribe has been taken off the market here in the U.S. Does anyone know if the Urso medication I'm reading about folks taking is unavailable in the U.S.?

14 Replies
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Hi Mary, Is it not a particular brand of Urso that has been removed?. Urso, in many guises is available worldwide. I would check with your doctor again or perhaps someone in the U.S. can advise. X

I am in the US and I take 500 mg Urso caplets 2 times daily. Im not sure what medication they are referring to but most everyone unless they cant tolerate it is on Urso.

Same dosage here...I am in Ohio.

Hi Mary,

Ocaliva is the newest medication in the US for PBC. However it isn't for everyone. It is for people who are allergic to Urso (which is rare) or non-responders to Urso. A non responder is someone who takes Urso and the Urso is not working to lower alkaline phosphatase. In some cases a few patients need Ocaliva and Urso for special reasons, like they are responding to Urso but it is not slowing down the PBC markers enough. Many of our doctors are learning about PBC right along with us. But Urso was the only new medication for about 20 years until Ocaliva. Urso is prescribed as the first line of treatment for PBC to date. The newer OCA is only being given to special cases on a case by case basis.

Hope this helps.

Kathy

Mary, I am in th U S and just picked up my URSO refill yesterday. I take 500 mg twice a day for four years now. I have not heard anything about it not being available.

Good luck!

Mary,

Urso is definitely still being made! There are different pharmaceutical companies that make it and some of them have discontinued making it. Therefore there are fewer companies making it but it is still in use. In fact thus caused the price of urso to increase drastically a while back. Your doctor needs to check again.

Wanda

Not sure what medication your Dr is talking about but Im in southern Indiana & have been on Urso since diagnosis ( lost my insurance for awhile but went right back on it as soon as the issue was fixed). That's crazy for him to say this. You need a new Dr if this one knows nothing of Urso. It has been the go to med for many many years.

Best of luck & stay strong❣️

Shannon

Shulsey
Shulsey in reply to Shulsey

I actually take 500mg Urso twice daily plus 5mg Ocaliva once daily. The Urso stopped working on it's own so my university hep Dr added the Ocaliva in June. It's working, I've posted the most recent hepatic panel of labs on my page. My numbers have never looked so good 👍

Just picked up my Urso last week.

I live in us and still taking urso.

Hi Mary 2017; perhaps your doctor meant a brand name drug ? For sure the generic form of urso is available in the US-- Best to get referred to a hepatologist, even if it means a bit of travel--doesn't sound like your doctor is quite on top of things....

Hi Mary :). I've been taking Urso since my diagnosis in January and have resolved I will be taking it For the rest of my life. I am on two Facebook PBC groups and nearly everyone is taking Urso and have been since being diagnosed. I would consider having your dr do some reading or find a new GI/Hep specialist. It's important to begin treatment right away to slow the progression of the stages. Good luck and big hugs :)

Thanks everyone. My doctor sent my liver biopsy to the Mayo Clinic for a second opinion on the diagnosis before treatment. So waiting on that.

I'm in NJ and I take it. I haven't heard anything about it coming off the market. I don't know how old you are, but Medicare considers it a Tier 4 drug which means you have to pay a percentage of the retail cost - so it's expensive. Maybe that's what your doctor meant, that it isn't covered with a flat rate prescription plan. The whole name is Ursodiol. Maybe your doctor isn't familiar with it and only searched for "urso"? If so, you'd better find yourself another doctor!

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