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Patient Perspective PBC Pruritus
Scratching the Surface: A Patient's Journey With PBC Pruritus

Released: October 03, 2024

Expiration: October 02, 2025

Pam Rivard
Pam Rivard, RN
Activity Information

Activity

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Course Completed
Key Takeaways
  • It can take years to receive a diagnosis of PBC.
  • HCPs may consider PBC if other causes of itching have been ruled out.

I was definitively diagnosed with primary biliary cholangitis (PBC) pruritus in 2009, but I itched for decades before my diagnosis. My PBC diagnosis came about after I had abnormal liver labs during a routine visit with my primary care provider (PCP). After referral to gastroenterology, I received a liver biopsy that was indicative of PBC. Despite having a diagnosis to link the itching to, there was nothing specifically done to address my itching.

What has been shared with me is this: PBC is rare, why would the healthcare community focus on it? I will tell you why. PBC-related itching can be incredibly uncomfortable. Itching and the resulting scratching can be painful. Itching can be all-consuming. Itching intensely over expansive amounts of time is similar to intractable pain. We know untreated pain has consequences, including suicide.  

In sharing my story, my hope is there is something about it that can help healthcare professionals (HCPs) and other people who are living with itching.

On Monday, November 18, 2024, I will be part of a symposium at the American Association for the Study of Liver Diseases 2024 (AASLD 2024) meeting in San Diego, California, focused on improving pruritus care in people with PBC. I invite you to read more about my story and register to join the live, interactive symposium, either in person or virtually.

Path to PBC Diagnosis
Before being diagnosed with PBC, I always had something to blame the itching on: farming, poison ivy, a bug bite, a medication. I sought help for these acute itching issues with both dermatologists and allergists and, at different points in time, several different allergens were identified and addressed.

My itching was first diagnosed as idiopathic by an allergist who was very thorough. He investigated a latex allergy at a time when latex was just recognized as an allergen. I was negative for having a latex allergy. He had great compassion for me given my deeply scratched and scarred skin but had no clear diagnosis. Ultimately, I started taking an antihistamine for other allergens he identified. 

Later, with my itching never ceasing, I followed up with a dermatologist and endured biopsies, ridicule, and finally a diagnosis of reacting to parasites my pets carry despite no evidence to support it. I received no treatment for this diagnosis. My poor experience led me to refuse to see a dermatologist again for over 20 years.

In the meantime, I continued with my allergist and my PCP for years and was prescribed medications for typical allergies and itching.

I was diagnosed with PBC in 2009 after my PCP referred me to a gastroenterologist for follow-up on abnormal liver laboratory values. PBC was diagnosed after I underwent a liver biopsy. I was told I would just have to live with the itching and liver pain; there was nothing to help these symptoms. I was also instructed to return annually for laboratory checks. There were no medications for PBC other than to take ursodeoxycholic acid.

Just recently, my pulmonologist suggested I returned to my allergist and possibly discover one or more triggers for my asthma. My allergist performed a thorough work-up and determined I definitely have no allergies.

And yet I still itch.

HCPs across all specialties are missing the relationship between itching and PBC. I have been treated for allergies and what I describe as insane itching, independent of hepatology and my PBC diagnosis, for many years. I am not faulting the medical community, but I worry there is so much focus on the symptom of itching that a possible underlying autoimmune disease is not being thought of or addressed.

Living With Itching
My mantras for living with itching have become: “It is my life” and “It is just what I deal with.”

Based on the fluctuations in my itching—which can come on suddenly and severely—I receive most of my itching medications at urgent care facilities. Sadly, if I were to see my primary care HCP, sometimes it would take so long to get the medication that, by the time I had something with which to treat it, the itching would be a distant memory.

To me, itching is like a migraine. It comes on intensely and without warning and, when it is over, I return to my regular life.

One thing that kept me from seeking help for my itching, especially before my PBC diagnosis, was the inclination of HCPs to blame the itching on mental health issues if there was no other reasonable explanation for it.

However, I find the assessment questions about my itching really frustrating. The results that the HCP gets are not conclusive. The HCP cannot determine why I am itching—they can only see evidence that I have been itching based on the marks from my scratching.

Furthermore, I have never been asked about my family history when assessed for itching. Autoimmune diseases are often hereditary, and since PBC falls into this category, family history would be important to assess. Even though there are itching assessment tools, I feel like they are missing something, and an HCP cannot provide an accurate assessment of one’s itching until they have the correct tools.

I have experienced itching so unbearable that I would do anything to stop it. On occasion, I thought about going to the emergency department to get help for it because it was that severe. I did not care what they gave me, even if it was something to knock me out. I just wanted the itching to stop.

How Things Have Changed and Where We Go From Here
The whole world of science and medicine has changed since my PBC diagnosis nearly 15 years ago. Research into PBC and PBC-related itching is more extensive, which I am excited about. HCPs more routinely check for autoimmune diseases like PBC and may be diagnosing and treating PBC faster than they used to.

However, even though awareness of PBC among HCPs is increasing, my life and my itching have not really changed. There is no treatment that takes away my itching when I need it to. My ideal itching treatment would be a topical spray that works instantaneously, can be used as needed rather than daily or chronically, and can be used to treat itching on any bodily surface.

Conclusions
I want HCPs to understand how long and difficult the road to PBC pruritus diagnosis and treatment is. I have been fortunate to have had excellent health insurance and HCP care my entire life, and even in this privileged situation it has been a struggle to get diagnosed and treated.

I would love to participate in a clinical trial for an itching medication. I would gladly participate for the greater good to help everyone in the world who has an itching problem.

I think it’s powerful for HCPs to listen to and believe their patients when they say they are itching and commit to doing everything they can to help investigate and treat it.

We will delve deeper into the topic of PBC pruritus care in an interactive panel discussion-based symposium at AASLD 2024. Topics will include the patient burden of PBC pruritus, assessing and managing pruritus in clinical practice, and new and emerging PBC therapies. Join us in person or via live simulcast to hear expert faculty share perspectives and recommendations on caring for patients with PBC-related pruritus.

Your Thoughts?
What test(s) and/or treatment(s) have you found helpful in assessing and treating patients with PBC pruritus? Join the discussion by posting a comment.