How my rheumatoid arthritis and pulmonary fibrosis connect
After getting past a rough case of pneumonia, I learned more about my diagnoses
One of my fears about my pulmonary fibrosis (PF) and lymphocytic interstitial pneumonia (LIP) is how vulnerable I am to catching any virus that presents itself. I recently had to face this fear.
I’m finally returning after battling a long haul of pneumonia. It was a painful process. I never took for granted my opportunity to pray that I’d heal from this bout. I was so afraid I couldn’t fight it.
The coughing, for instance, wouldn’t let me catch my breath, something I’d never experienced before. It had me gasping for breath, for air, for a chance to give my lungs a break. And those lungs felt like they were on fire. Every inch of my body hurt, as if a train had run me over.
Getting out of bed was a task in itself. I already use a daily oxygen supplement, but I still felt like it wasn’t enough to sustain me.
For a whole month, I was afraid the pneumonia wouldn’t leave my lungs. Every day I’d hear them rattling and wheezing. It felt like a tornado was alive and swirling within my lungs. I was grateful for my medical team’s determination to help me beat this illness.
More information about another diagnosis
While I was under treatment for pneumonia, my doctor felt it was a good time for me to get a high-resolution computed tomography (HRCT) scan and lab work to make sure my lungs were responding to the medications.
My only concern was getting stronger and better from this nightmare, and soon. I never thought about my other diagnoses. I just wanted to recuperate and put this crisis behind me.
On what would be my final follow-up from surviving pneumonia, my pulmonologist and primary care physician both felt it’d be appropriate to send me to a rheumatologist. They were both concerned with my lab work, especially the high numbers on my anti-cyclic citrullinated peptide (anti-CCP) antibody test. This blood test is for patients who may have antibodies for rheumatoid arthritis (RA).
I’ve written about having RA in previous columns. Back then, I mentioned my belief that it would reach joints throughout my body. I never once gave thought to it reaching my lungs. I hadn’t been fully educated on how RA contributes to my other diseases.
Learning more about rheumatoid arthritis
I’ve come to understand that RA can develop from interactions between genetic and environmental factors. Women on my maternal side have been affected by RA, but I’m the first in my family to have RA develop in the lungs.
With my rheumatologist’s knowledge and my reading about the ways RA affects the lungs, I’ve come to understand its connection to my LIP and PF.
The Mayo Clinic lists several lung issues connected to RA:
- Scarring in the lungs related to long-term inflammation
- Lung nodules, which often don’t cause symptoms or increase cancer risk
- Pleural disease, where the tissue surrounding the lungs becomes inflamed
- Small airway obstruction, which can occur when the walls of the lungs’ small airways thicken due to inflammation, infection, or injury.
A study published in 2010 in the journal now known as Arthritis & Rheumatology found that approximately 1 in 10 people with RA will develop interstitial lung disease (ILD) over the course of their disease. When RA is associated with ILD, scarring can develop, causing PF.
“Usual interstitial pneumonia and nonspecific interstitial pneumonia are the most common patterns seen with interstitial involvement in rheumatoid arthritis,” according to a 2015 study published in Rheumatic Disease Clinics of North America. Treatment, the study says, involves “long-term therapy with immunomodulatory agents.” According to my rheumatologist, CellCept (mycophenolate mofetil) is a great candidate to help treat inflammation of the lungs.
Protecting my lungs
To stay on track with my treatment, I must now watch out for any symptoms that could arise due to RA. Communication with my medical team is key to survival. Regular checkups and lab work can help to discover other possible complications. Getting flu and pneumonia vaccinations is essential, as well.
Make sure all your questions get answered; advocating for one’s own health is just as important as the treatment received. As I told my doctor, “I know my body, and any symptom it develops deserves to be acknowledged and treated.”
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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Comments
Rowena Newton
Thank you for sharing your story Ann. I am in a similar predicament, although I have dermatomyositis, a different auto-immune disease and tested positive to an autoimmune antibody anti Jo which made the chances of developing Interstitial Lung Disease quite high so I was forewarned. It has progressed very gradually and I was basically told that as long as the dermatomyositius remained under control, the ILD shouldn't deteriorate. Unfortunately, there was a mix up with my medication and I was on a half dose of mycophenolate and the dermatomysitis had a mild flare. I also had covid and another respiratory virus. About a month later, I started experiencing noticeable shortness of breath even around the house and noticed that my lips were turning purple with minimal exersion. I had a lung function test and found my lung volume had dropped from 50% to 30%. The CT scan apparently reported no additional fibrosis but this has since been questioned. Last week I had my first infusion of Rituximab and go back for my second infusion next week. I have also been prescribed an anti-fibrotic drug called Ofev which can have some nasty side effects and I know I've got to start taking it but tomorrow seems like a good idea. I am doing diaphramatic breathing exerices and using a respiratory exerciser when I remember and going on 10 minute walks. Hard to keep it all up and the determination, especially when the treatments are so strong but like you, I am in my early 50's and have too much to live for.