Starting Treatment for PBC

My life changed forever on December 30, 2019. It was the day I started Ursodiol, the first-line treatment for primary biliary cholangitis (PBC).

Many patients refer to Ursodiol as "Urso" for short. It is also referred to as ursodeoxycholic acid or UDCA.

Understanding how Ursodiol works

Ursodiol was first found in bear bile acid long ago and then began to be made synthetically. For patients with PBC, Urso helps our bile pass more easily through our bile ducts to try to slow down damage to the bile ducts.

Once the bile ducts are damaged, bile begins to back up in the liver, which can cause fibrosis, cirrhosis, and liver failure.

Starting it felt like taking my life back

Ursodiol is prescribed based on the patient’s weight, which is something I did not know when starting my initial treatment. In addition to being prescribed for PBC, Urso treats gallstones to dissolve them.

The first day I took Urso, I felt like that was the moment I was going to take my life back. It was my moment to fight back against my body trying to attack itself. It was my first step to becoming a warrior.

Then came the gastrointestinal side effects

My journey starting Ursodiol was a little rocky at first. In the beginning, I suffered from pretty severe gastrointestinal side effects.

I was working in the intensive care unit at that time. I am a respiratory therapist, so my job was to maintain airways, breathing, and ventilators. I remember I would put a patient on a nebulizer breathing treatment and then run to the bathroom to be sick. I would come back out, take off the breathing treatment, and then run to the bathroom. I would check a ventilator and then run to the bathroom.

That was a vicious cycle that lasted for the first month or so. I remember thinking I could not continue living like this. I felt worse on treatment for my PBC than I did not being on any treatment.

How I resolved the side effects

That was when I learned some very important advice from a patient who had been living for a long time with PBC. She recommended I reach out to my pharmacy and see if they could provide me with the same medication made by a different manufacturer.

I learned that some people are allergic to the fillers put in Ursodiol, and it can cause major issues like the ones I went through.

My pharmacy was able to fill a new prescription for me from a different manufacturer. Immediately, my GI issues went away. This is advice I always pass on to the newly diagnosed, just in case. Capsules and tablets are available for this medication, but I have always used capsules.

The results of treatment for me

Within three months of starting Ursodiol, my liver enzymes normalized. And my pruritus, or itch, went away completely. I’ve been very lucky on my journey living with primary biliary cholangitis.

Unfortunately, many others are not and require a second-line treatment to help treat their PBC. My disease has been maintained over these last six years on Urso alone, which I am very grateful for.

I recently learned that patients who are diagnosed young, like I was, tend to have more aggressive and advanced PBC. I am so thankful that is not the case for me.