Itching: an Unbearable Symptom of PBC

One of the most unbearable symptoms that can come with having primary biliary cholangitis (PBC) is pruritus, or severe itching. The profound itch can take a devastating toll not only on the body but on our mental health as well.

At first I thought I just had allergies

I have always suffered from severe allergies. A few years before my PBC diagnosis, I completed a full allergy panel. I was not allergic to only one or two things I was tested for. So sneezing and itchy skin have always been something I’ve experienced in my life. I never would have imagined that my itching could have been attributed to something else.

Discovering that itching is a common PBC symptom

When I was first diagnosed with PBC, I found out that itching was a very common symptom. My hepatologist started me on colestipol to try and combat the itching I felt. It helped, but it also came with its own side effects.

I’ve been lucky on my PBC journey. My itching slowed down after my liver enzymes normalized from taking the first-line treatment, Ursodiol, for PBC. But that’s not the case for most patients.

What triggers the itch for me

My itching now usually occurs on the palms of my hands and the bottoms of my feet. I’ve noticed that a major trigger for my itch is stress. That’s when it always becomes noticeable. It can make sleeping difficult, and I know that’s something other patients experience.

How I find relief

Besides prescription medications to help with itching, I had a PBC patient recommend Sarna lotion to me. Sarna lotion has a nice cooling effect and can really relieve the itch when it’s affecting me.

I occasionally will take one of my over-the-counter allergy pills as well if the itching is pretty bad. I also like to put a major focus on keeping my skin hydrated with high-quality lotions and creams.

What the itch feels like

A few years ago, I heard the PBC Foundation, an organization based in the UK that provides support to patients, describe the itch. They described it as feeling as if ants are crawling all over your skin. I thought that was a really good way to describe the way it feels. It’s nonstop, and it can travel across different parts of the body. And nothing provides relief. It’s profound and unending at times.

When I feel the itch on my palms or on the bottoms of my feet, the itch feels very deep, as if it’s on the same level as my bones. It’s almost as if I’d have to scratch off layers of my hands or layers of my feet to actually feel an ounce of relief. It’s relentless and unbearable.

How it affects my mental health

That’s when it starts affecting my mental health. It can be hard to focus on anything else but the severity of the constant itching. When it does happen to me, I’ll feel it when I’m trying to go to sleep. And we all know that not sleeping does such damage to our bodies and our minds.

So of course, in turn, that can make the profound fatigue and brain fog worse, which leads to more recognizable cognitive impairment and forgetfulness.

Hope for the future of pruritus management

The pruritus associated with PBC affects so many patients and can truly have negative consequences for us. It’s a feeling that I would never wish on anyone.

But there are medications that can help. And what’s even more exciting is that there are clinical trials being performed to try to help people with PBC better manage the itch.