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My Experience With PBC
A Necessary Part of Liver Disease? My Experience Living With PBC-Related Pruritus

Released: June 10, 2024

Expiration: June 09, 2025

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Key Takeaways
  • The most important message I want to share with healthcare professionals is to listen to your patients with PBC when they tell you about their symptoms.

I have been living with primary biliary cholangitis (PBC) for the past 3 years, and to say that it has been life-changing is an understatement. I invite you to read my story and learn how PBC-related fatigue and pruritus have turned me into a shell of the person I used to be and what my hopes are for the future of PBC pruritus treatment.

Fatigue and Brain Fog
Prior to my diagnosis, I was busy and energetic. I was the type of person who had my kids’ birthday parties planned 6 months in advance. Now I am so fatigued and distracted by “brain fog” that I have difficulty remembering family members’ birthday parties.

I used to be someone who helped with activities like cleaning the house and grocery shopping; now my husband does all the cleaning and must push the grocery cart for me while we shop.

The fatigue is present all the time and sometimes flares to the point that I can sleep for 16 hours. If I know I am doing something on a Friday, I make no plans for the rest of the weekend because I have to recover from being active on Friday. I live very much based on the amount of energy I wake up with on any given day.

Pruritus
Like the fatigue, the itching I experience is relentless. The itching is present on my hands and my legs, and even my eyelashes itch sometimes. I can scratch and scratch and scratch, and although I get some kind of relief from the scratching, I know that I am not actually scratching the itch. I liken it to touching fiberglass—nothing stops that fiberglass itch until you physically remove the fiberglass. Except in PBC, I cannot remove the thing causing the itching.

One of the most frustrating parts of the constant itching is that I itch while I sleep and oftentimes subconsciously scratch. Some days I wake up and my stomach and thighs look like I met Freddy Krueger in my dreams because of the giant, red scratch marks covering them. It is a double-edged sword of scratching in my sleep—but actually sleeping—vs the itching waking me up and causing me to be unable to go back to sleep.

It is also frustrating to outwardly look like nothing is wrong with you. People see that I have lost weight and think I look great, but they have no idea how I feel and what my body looks like with the scratch marks on it.

I am thankful, at least, that I rarely have itching on the bottoms of my feet. That is one of the most horrendous spots to experience itching.

Nonpharmacologic Modalities I Have Tried to Alleviate My PBC Symptoms
Since being diagnosed with PBC, I make sure that I eat very clean. I have not eaten red meat in 3 years, and I do not eat things like fried foods or simple carbohydrates. I do everything that I can to take the external stress off my liver.

For the itching specifically, I switched from using chemical-laden dryer sheets to wool balls and changed what laundry detergent I use. I sometimes take a bath in baby oil before bedtime, and it moisturizes my skin and provides a barrier so that when I scratch, it’s not as severe.

Sometimes I have been so desperate to relieve the itch that I have scratched my back with butter knives. I now have a backscratcher in every room of my house. I have also been so itchy during a trip to the grocery store that I rubbed my back on a pillar in the store like a bear on a tree. I did not care who saw; I just wanted the itching to go away.

How Healthcare Professionals (HCPs) Address My Pruritus
I have been told many times by HCPs that itching is the biggest symptom associated with PBC but that they have no idea what to do about it. They tell me that there are things we can try (like cholestyramine) but that what we have is not very effective. When I take my cholestyramine, it helps a little bit, but nothing makes the itch completely go away.

As a patient, it would help me to feel heard if I was consistently asked about my itching by my HCPs. I have never been asked to rate the severity of my itching other than when I was involved in a study, when I was asked to rate my itching on a scale of 1-10.

My Ideal Solution
The cholestyramine that I have been prescribed for my itching is difficult to take and to tolerate. Drinking the glass of water with the medication in it is like drinking the beach—it is so sandy in texture. It is also tricky to time taking it hours apart from my other medications.

The other hurdle is that the brain fog I experience often makes me forget whether I have taken my dose, and then by the time I remember, I cannot take it because I have already taken my other meds.

If I could design the ideal medication to alleviate my itching, it would be something that could be injected every few months. I do not want to have to take yet another pill, and there is no way a topical product would be useful given the extensive application that would be needed.

What I Want HCPs to Know
Please do not dismiss us. I think that HCPs often hear “fatigue” and “itching” from the patient and think those are just part of liver disease and move on. I want HCPs to stop viewing people with PBC as their medical chart and see them as human beings. What if I was your mother or your daughter? I think viewing us as humans would go a long way toward making us feel seen and heard.

I also think there should be more HCP education about PBC and the associated symptoms. I get the impression that most HCPs received a short lecture on rare diseases in school and that is where their education about PBC stopped. Learning from patients with PBC is key because I live with this disease every day.

Conclusions
Living with PBC and its symptoms is devastating. I am hopeful that we will find a cure or at least do a better job of treating the symptoms. I think sometimes that everything happens for a reason, and if I can be the face of this disease to spread the word about it, then I will do that to help others with this disease be seen.

Your Thoughts?
What is your approach to assessing, monitoring, and treating pruritus in people living with PBC? Join the discussion by posting a comment.