My Latest Pulmonary Issues With Lupus
Last updated: March 2023
I recently had a follow-up visit with my pulmonologist. The first thing we did was my pulmonary function test and I was happy to see that my results were the same as last time. The next thing he did was listen to my lungs. Everything sounded normal, and I had no complaints. I didn’t have any shortness of breath. I had no chest pains. I felt really good. I also informed him that I did get covid a few weeks back but I fully recovered even with a lupus flare after recovery. He was glad to hear that.
CT scan for lupus lung issues
He noticed that I hadn’t done a CT scan in a while and since I had recovered from Covid recently, he thought it would be a good time to check on my lungs. When I was initially diagnosed with lupus, I had shortness of breath, chest pains, and fluid around my heart and lungs. The chest CT scans also indicated I had cysts in my lungs, so I have done routine scans in order to monitor the progression. They were still small, and it wasn’t bothering me, so we left them as is.
My pulmonologist ordered a chest CT scan without contrast, and I scheduled an appointment at the earliest time slot available; 2 weeks later, I had my CT scan. Since I’ve done this so many times, I wasn’t nervous. I knew what to expect and knew what was going to occur.
I checked in and was brought inside to change into a gown. I placed all my belongings into the lockers and was whisked away to get my CT scan done. Since it was without contrast, I didn’t need an IV and was able to proceed to the room as is. Once I went into the room, they explained what was going to happen, and they made me lie down.
They told me I was going to hear a set of instructions on how I should breathe, when to hold my breath, etc. You are on a flat surface that moves you in and out of the scanner. It is much different than an MRI, and I did not feel claustrophobic at all. The exam was pretty quick. In less than 10 min I was done. Once the exam was over, I changed back into my regular clothes and was told that my results would be ready within 2-3 days.
Anxiety about test results
This was when the nerves kicked in. I was anxious about the results and hoped that everything would be ok. At my facility, the reports automatically go into our chart, so I am able to see the results before I talk to my doctor. When I got the notification that my results were ready, I quickly checked. As I was reading, I became even more nervous and focused on keywords: cysts grew bigger, numerous cysts appearing, new nodules, and follow-up chest CT recommended. I was scared and began to panic.
Increased lupus lung complications
Luckily I had an appointment with my rheumatologist and pulmonologist within days of getting the report. Both concluded that the cyst was not due to COVID but was more in line with lupus activity. At the time, I was only taking Plaquenil because I was on the fence about starting a family, so I had weaned off CellCept and Losartan. My rheumatologist thinks because I was only on Plaquenil, it wasn’t enough for my body and hence the lupus activity in my lungs. To slow down the progression of this, my rheumatologist prescribed azathioprine (Imuran). This medication was safe for pregnant women, so if we ever decided to, this medication would be fine for me.
Thankfully, I did not have any symptoms that would indicate issues with my lungs. My PFT was normal, my breathing was normal, and I had no chest pains, etc. Without the CT scan, we would have never known about this progression. I have to do a follow-up Chest CT scan in 3 months. Hopefully, the new medication is working, the current cysts I have do not grow bigger, and no new ones are forming. But, if the medications are not working, we will have to revisit the idea of taking CellCept again.
Has lupus affected your lungs?
Which resource do you think is most urgently needed in the lupus community?
Join the conversation