Learning about the link between autoimmune disease and PF
At first, we thought my husband's aches were just part of getting older
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Years before my husband, Donnie, first began having breathing troubles, he suffered from stiff, achy muscles and exhaustion. Each night, he’d come home from work exhausted, sore, and discouraged by the pain his body was experiencing.
At first, he attributed his discomfort to residual soreness from working in a high-paced labor job. He was routinely on his feet the entire workday, and as he got older, it began to take a toll.
Initially, he tried to ignore it. We were getting closer to middle age, and we thought the aches and pains were probably typical. He tried over-the-counter pain relievers, but they didn’t seem to do much, and he knew he couldn’t just keep taking them every day. He sought chiropractic care for his achy back. He tried stretching, lifting weights, Epsom salt baths, cutting out sugar from his diet, and whatever else he could find that might help, all to no avail.
He saw a few doctors who suggested various treatments over the years, but nothing really helped to take the pain away, so he resigned himself to the fact that the discomfort was probably just part of working in the automotive repair field for nearly two decades. He thought he was wearing out his body.
Finding the culprit
All of this came to a head when, in 2021, he began experiencing breathing problems in addition to pain, stiffness, and fatigue. First came the cough and shortness of breath. Initially, it was mild, and he attributed it to just being out of shape. But over the next year, it became severe and began to take a toll. He saw three doctors during this time and was misdiagnosed with pneumonia, asthma, and unresolved COVID-19 symptoms before a different doctor realized something much more was going on. That doctor referred Donnie to a pulmonologist.
Donnie had a high-resolution computed tomography scan, radiographs, and routine blood work shortly beforehand, so the pulmonologist could review the results before his appointment. The pulmonologist talked about the scarring in Donnie’s lungs and told us that more tests would be needed to figure out what was causing the damage. A bronchoscopy and a biopsy via video-assisted thoracoscopic surgery were performed, and additional blood work was done to screen for autoimmune disorders.
When the blood work finally came back, it showed that my husband had positive markers for three autoimmune disorders: scleroderma, Sjögren’s disease, and polymyositis. According to his doctors, the main offender for my husband is polymyositis, a condition in which the immune system attacks its own muscle tissues.
Polymyositis can cause a plethora of symptoms, but the main one is muscle weakness and stiffness, both of which my husband had been experiencing for years before his pulmonary symptoms even began.
When we realized all of his muscle pain was stemming from an autoimmune condition, everything finally fell into place. What we thought was normal wear and tear from a laborious job was actually the onslaught of polymyositis symptoms, which eventually led to increased inflammation and scarring in his lungs.
While pulmonary fibrosis (PF) is considered a rare disease, two other people in my close circle of family and friends have autoimmune diseases with lung involvement. One has rheumatoid arthritis, and the other is currently undergoing testing to obtain a diagnosis.
Like many people, I didn’t understand the potential severity of autoimmune diseases until they struck my family. When I hear that friends or family members are struggling with similar issues, I always try to encourage them to seek out medical advice and push for testing. Autoimmune symptoms can be tricky to track and difficult to diagnose. Sometimes, as in my husband’s case, they can sneak in and wreak havoc before you even know they’re there.
As for Donnie, he now sees his rheumatologist for a checkup twice a year. He takes mycophenolate mofetil to help suppress his immune system. His rheumatologist and pulmonologist work together to best manage his symptoms, and we are so thankful for their invaluable care.
Lastly, I’m encouraged to know that a great deal of research has been done regarding the immune system. Just last year, a team of researchers was awarded the Nobel Prize for their groundbreaking work on autoimmune diseases. It is my hope that the next decade will help to restore health to many people who have been suffering.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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