PBC Treatment: Difficult Side Effects and Other Challenges

Following my diagnosis of primary biliary cholangitis (PBC), my gastroenterologist immediately started me on Ursodiol at a daily dose of 1,200 mg. Due to my weight at the time, the initial dosage was quite high. Adjusting to this first-line treatment was incredibly difficult.

Severe side effects from my first treatment

I immediately began experiencing severe side effects, including hair loss, an upset stomach, and constant nausea. When I reached out to my doctor to explain these challenges, I was told that my body simply needed time to adapt to the medication.

During those first few months, the gastrointestinal distress severely impacted my quality of life. The constant discomfort and stomach pain forced me to miss work or leave early. At home, the physical pain drained my energy, leaving me unable to keep up with daily chores or spend quality time with my family.

To manage these issues, my doctor eventually prescribed additional medications to help mitigate the gastrointestinal side effects. Over time, the adjustment period passed, the treatments began to work, and I gradually started getting my life back.

Trying a second-line treatment for PBC

I took Ursodiol alone for the first year. While it successfully lowered my liver enzymes, they did not drop down to the normal range. My new hepatologist sat down with me to discuss our options and recommended adding a second-line treatment, Ocaliva, to my regimen.

Once this second-line medication was added, I was monitored with monthly blood work. The combination therapy worked wonderfully: it significantly relieved my severe itching, and my liver numbers steadily improved.

Seeing that progress nearly two years after my diagnosis was the best news I could have received. We finally achieved our ultimate clinical goal of bringing all of my liver numbers back within the normal range.

Having to stop one of my treatments due to insurance

Unfortunately, our success triggered a new obstacle. A year into this effective routine, my health insurance provider denied coverage for my second-line medication, claiming it was no longer necessary because my numbers were normal. In reality, my stable health was a direct result of both medications working together. My healthcare provider filed an appeal, but it was lost.

Left with no other option, I had to stop the second-line drug, continue taking only Ursodiol, and rely on my hepatologist to closely monitor my enzymes. About a year later, my liver enzymes spiked again. My hepatologist immediately tried to prescribe a second-line treatment. Predictably, the insurance company denied it again, requiring another round of appeals. This time we won the appeal, and I was able to resume the medication.

However, my two-month follow-up blood work revealed that my liver enzymes had climbed even higher than before. Because of this adverse reaction, Ocaliva had to be stopped permanently.

Trying out another newer treatment, and my results

For the next year, my hepatologist requested monthly blood work to keep a close eye on my liver function. Finally, another second-line treatment called Iqirvo was added to my regimen. I am incredibly relieved to report that my lab results, as of my writing this, show significant improvement. This proves that my liver enzymes are moving in the right direction and are back within normal range.

Getting to this point was exhausting. It required endless phone calls, repeated appeals, and constant back-and-forth communication between my doctor's office and the insurance company. Despite the strain, I am deeply grateful that we achieved our goal.

A vital lesson I have learned

My journey has taught me a vital lesson: as patients, we must never give up. We must push forward to ensure we receive the highest quality of care. And we must keep the lines of communication wide open with our medical providers, so we can make these critical decisions together.