Primary biliary cholangitis (PBC) was not the first autoimmune disease I was diagnosed with, and it wouldn’t be the last. I have been diagnosed with three autoimmune diseases so far, and I’m suspected to have another.
Like myself, many patients with PBC suffer from more than one autoimmune disease, and there are unique challenges that come with multiple diagnoses.
My journey to diagnosis
My path to diagnosis was filled with unexpected twists and turns. When I was 24, I had what I thought was my first flare up of psoriasis. At that time, it covered my foot and the palms of both of my hands, and my skin was sore and bleeding. I was struggling to get through my work days. I saw my first dermatologist and was able to clear it up and get relief with topical steroids.
I became pregnant with my first son during this time and I often wonder if the pregnancy helped my skin, as with each pregnancy, I was able to get complete relief from my psoriasis symptoms. Looking back, I remember having minor skin issues when I was a child, but I never saw a doctor or sought treatment until adulthood.
In 2013, my third son was born premature and spent a month fighting for his life in the NICU. I had other traumas happening at that time in my life, and I started having symptoms of joint pain. I saw a great rheumatologist who quickly diagnosed me with psoriatic arthritis, due to my history of psoriasis and my current symptoms. My inflammation markers and liver enzymes were also both very high, causing concern.
This was the first doctor to question if I might have PBC. He gave me referrals to see a specialist, and within the year, I had an official diagnosis.
Managing symptoms
One of the struggles I find with having multiple autoimmune diseases alongside a rare disease are the symptoms. People with PBC often suffer from an intense itch, but many patients with psoriasis also have itching. Psoriatic arthritis has affected almost every joint in my body, and PBC is also known to affect joints.
One of the worst symptoms is the fatigue–it’s invisible and so difficult to explain to those who don’t suffer from it. Similarly, all of my autoimmune diseases can also cause fatigue. So, when I’m seeing many different doctors who are asking me about my symptoms, I’m not always sure which symptoms are caused by each disease. Sometimes, blood work helps narrow it down, but inflammation and flare ups can be so difficult to manage in my day to day life.
Finding treatments that work for me
Some of the first-line treatments used for psoriatic arthritis are not safe for liver health. For example, I know many people start with methotrexate in combination with other medications or alone. This drug often negatively affects the liver, and since I have a compromised liver, it’s unsafe for me to try this treatment and others like it.
Many of the other medications used to treat PBC are biologic medications, which are given in shots. These can cause some symptoms that scare me, and they can sometimes cost thousands of dollars a month.
I have found a few methods to help me manage my multiple autoimmune diseases. One of them is My Chart, a free app that lets me connect with my treatment team to share information between different doctors. It also allows me to manage appointments and keep most of my medical information in one area.
Additionally, I try to keep my disc, slides and physical copies of tests and procedures handy for my appointments. I often message doctors to ask questions, as it can be difficult to cover everything in an appointment. I only use one pharmacy to keep my regular medications in order.
I’ve found great support groups on social media that have not only helped educate me but help me not feel so alone. I’ve also recently bought a health journal that I use to track my symptoms, appointments and medications. I’ve learned that we have to be our own advocates to bridge the gap between our doctors’ knowledge and what we know about our own bodies.
