PSC, a rare autoimmune disease

After what was almost a half a year of tests, I found out I had Primary Sclerosing Cholangitis (PSC). What triggered such tests? Abnormal liver blood tests. I was told they were really high and that I couldn’t be on any meds for my Ankylosing Spondylitis while the cause of this was investigated. I was referred to a Gastroenterologist and he set up a plan with diagnostic tests that I needed to have done in order to figure out why my liver enzymes were so high. I had an ultrasound done. This was a standard test but my gastroenterologist needed more information so he scheduled a liver MRI. This test was a little unpleasant because I had to sign my life away in paperwork and the dye going into my body was an uncomfortable feeling. He wanted even more confirmation so I had a liver biopsy done. All of these tests while being a new mom were overwhelming because I was also off my AS meds. In the end, I was diagnosed with Primary Sclerosing Cholangitis and I had no idea what it was.

What is Primary Sclerosing Cholangitis?

PSC is a rare autoimmune disease that affects the liver bile ducts (small tubes through which bile flows from the liver to the gallbladder and intestines).

As you can see in the image above, the bile ducts gradually decrease in size due to inflammation and scarring. As a result, bile that is normally carried out of the liver accumulates within the liver, which then damages liver cells.

I get yearly ultrasounds to check for disease progression. So far my liver looks good and my disease is pretty stable. I also had a bone density scan done which showed osteopenia. If you have an autoimmune disease, ask your specialist about a bone density scan. My gastroenterologist was surprised I hadn’t had one done given that I have Ankylosing Spondylitis.

PSC is more common in males than females just like AS is noted to be and it’s diagnosed around the same age as well, between the ages of 30-50. I was diagnosed at 32.

In many cases, PSC occurs in association with inflammatory bowel disease but the exact cause of PSC is still unknown. Having both PSC and AS is called having a comorbidity. Comorbidity means more than one disease or condition is present and they are often chronic or long-term conditions.

According to the Canadian Liver Foundation, the symptoms of PSC are:

• itching

• fatigue

• jaundice (yellowing of the skin and eyes)

• episodes of fever, chills and abdominal pain which may indicate an infection within the bile duct.

Many of these symptoms may not occur until progression of the disease. I experience fatigue but it’s hard to identify if it’s from my AS or my PSC or maybe both.

In the advanced stages of PSC, cirrhosis may develop with signs of liver failure. Cirrhosis is a condition (not a disease) that results from permanent damage or scarring of the liver. This leads to a blockage of blood flow through the liver and prevents normal metabolic and regulatory processes. When the disease has progressed to liver failure, a liver transplant may be needed and this isn’t uncommon which is a very scary thought for me mainly because of the long wait lists that exist for those needing a liver transplant.

Another scary reality is that there are no treatments or cures for PSC. There’s nothing I can really do about its progression which is a very helpless feeling. Biologics have been lifesavers and extenders in the lives of those of us suffering from AS and I just wish there was something like that for PSC. There are preventative things that you can do to keep your liver healthy. I’m no dietician or physician but my liver is looking good for someone who has had the disease for 9 years so I must be doing something right. First thing I did was I stopped drinking alcohol. Now I do have a glass of wine on special occasions but that’s about it because we all know the damage that alcohol can do to your liver. Eating lean, cutting out red meat and limiting processed foods help keep my liver healthy. I’m a pescatarian so I don’t eat meat but I do eat fish. I really despise that term because it sounds like pesky which is the equivalent of annoying so I usually say “I don’t eat meat but I eat fish”. From my experience, a lot of people don’t know what a pescatarian is so it’s easier to jump right to the definition. We all know processed food is bad for us but most of us live really busy lives which is why processed food exists. So all I’m saying is to be more conscious of what you’re eating and limit the processed food as much as possible. I’ve also used milk thistle. There is no scientific data that proves that milk thistle helps the liver but there’s a lot of literature that talks about the possibilities. It’s something to look into with your doctor if you’re thinking about using it.

There’s also a lot of debate out there about the long wait times for liver transplants. Should someone like me who has a liver autoimmune disease have to wait in line behind someone who needs a liver transplant due to alcohol abuse? Alcoholism is a disease as well so it’s a complex question. I would love to hear what you think in the comments.

I can only hope that bringing awareness to Primary Sclerosing Cholangitis will bring about more research and better outcomes for those of us suffering from this rare autoimmune disease. Please share and help spread awareness about Primary Sclerosing Cholangitis.

Thank you for taking the time to read my post. I would appreciate a like and a follow 😊

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