The Itch With PBC

One of the most frustrating aspects of dealing with primary biliary cholangitis for me has been the itch, or as it is known in medical terms, pruritus.

Where I am itchy

Back in 2020, prior to being diagnosed, I noticed that at night I would be very itchy.

The specific areas of my body that were itchy were the soles of my feet, the palms of my hands, my face, and my scalp. At that time, I did not understand the source of the itching, as I am not allergic to many things.

This symptom, along with the severe fatigue, led me to reach out to my primary care physician at the time to follow up. I went to multiple appointments. I continued to deal with the itchy skin for about 11 months, especially during the nighttime, before being diagnosed with PBC.

Finally, once the diagnosis came about, I knew the cause of the itching. But I needed to continue to deal with it.

The unique sensation of a PBC itch

As I previously indicated, itching had been an ongoing issue for me even prior to the diagnosis. This caused me a great deal of issues since it happened at night. The itching kept me awake on and off during the night.

The itch that I experienced was very different from anything I had experienced before when I had allergic reactions. This type of itch felt like it was deep in my skin. It was almost like ants crawling all over my scalp, face, the palms of my hands, and the soles of my feet.

It did not matter how much I scratched - I felt no relief whatsoever. The itch was relentless. It affected my quality of sleep and also my skin in those areas.

The impact of all the sleep I lost

I tossed and turned most of the night just to be woken up by the itch at random times. During that timeframe, I was only able to sleep a few hours at night, and then I needed to wake up to start my day.

In the mornings, having to wake up with the little bit of sleep I got did not feel refreshing at all. That was frustrating to me. By not having enough energy, I felt like I was dragging myself for the rest of the day. Especially in the activities of daily life that required my attention including, but not limited to, work and house chores.

I was tired during work hours, as I was in the office. By the time I arrived home, I did not have any energy left to take care of the house tasks that I needed to complete.

Finding relief through treatment

Dealing with the itch left me feeling defeated at times because the over-the-counter medication I used was not helping relieve the itch. To me, it felt like a losing battle sometimes.

Once diagnosed and taking the proper medication — Ursodiol and Ocaliva, for me — the itching minimized significantly and was no longer an issue. I was able to get some quality sleep, but I think getting to that point took too long.