Recently, in the PBC support group I facilitate, I’ve been seeing some people say they are having a difficult time finding a pharmacy that can fill a prescription for ursodiol, or ursodeoxycholic acid (UDCA). Ursodiol is the first-line treatment for primary biliary cholangitis.
Ursodiol makes the bile in our bodies thinner so that the bile can move through the bile ducts easier and without causing damage to the bile ducts. With PBC, we produce thick bile. The bile is so thick that it damages the bile ducts. When that damage happens, fluid backs up into the liver, causing fibrosis, cirrhosis and eventually liver failure. So it is imperative for us as patients to be able to have enough of the medicine to take it every day.
What is PBC?
Primary biliary cholangitis (PBC) is a rare, chronic autoimmune disease that primarily affects the liver. In PBC, the body’s immune system mistakenly attacks the small bile ducts within the liver, causing inflammation and gradual destruction of these ducts. Bile, a substance essential for digesting fats and removing toxins, becomes trapped in the liver, leading to liver damage over time.
I remember a few years ago, right after I was diagnosed with PBC, I had a hard time finding a local pharmacy that carried enough ursodiol to fill my monthly prescription. Ursodiol dosing is based on weight. That means most of us patients have to take several pills a day.
Read more about PBC treatment and care
I had an ursodiol prescription sent to my local Walgreens. Walgreens actually called me and told me they didn’t have any ursodiol to give me. They told me it wasn’t prescribed at their location often, so they typically didn’t carry it in stock. When I was on the phone with my local store, they were able to search the Walgreens system and could not find any at any of the locations within 20 minutes of my store.
I remember feeling scared. My hepatologist told me how important it was for me to take ursodiol every day. It was my best chance at keeping my liver healthy. Eventually, I was able to fill my prescription through an online pharmacy.
Brick-and-mortar pharmacies
The worry of being unable to find ursodiol always sits in the back of my mind. I haven’t had any issues since, but lately some of my friends with PBC have been having difficulty. I’ve seen a few posts about PBC patients having a hard time finding a pharmacy to fill their ursodiol prescriptions. Most of the difficulty seems to be related to brick-and-mortar stores versus mail order pharmacies.
Some people have reported that they have been told that ursodiol is on back order. Some have said that the pharmacy is out of the specific manufacturer they prefer but that they can get ursodiol from a different manufacturer. And some have been told that the pharmacy no longer carries their preferred manufacturer and that no alternative manufacturers are available.
Ursodiol is not currently listed on the U.S. Food and Drug Administration’s database as a medication with a shortage. But it’s odd that suddenly my fellow patients are having issues with filling their prescriptions. Missing a day or two of ursodiol isn’t a big deal, but going for extended periods of time without it puts our lives at risk.
