Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

So, my rheumy and i were only just starting to explore the idea that I probably have lupus along with psoriatic arthritis. She ordered a bunch of labs, but also found something going on with my lungs. She ordered pulmonary function test. They found beginning of interstitial lung disease/pulmonary fibrosis. I guess my diffusion levels are low. The pulmonologist has ordered a lung CT to confirm.
Anyone here have experience with this?

November 8, 2018
 · 
Reactions
A MyLupusTeam Member

I was diagnosed with Sarcoidosis 16 years ago with the same symptoms! Before my lymph biopsy confirming it, my primary said he thought I had lupus. Now I'm told I am for them positive lupus antibody in my blood. Is this something I should look into further? I'm already on my 16th year of steroids and many other treatments in the past(remicade, methotrexate, etc) and had been in a remission. Then my new primary said I needed to stop my prednisone for a few days prior to my colonoscopy this past May! I told her if anything in the past they'd increase it before a procedure! But....I listened to her..ended up in the ER days later because I stopped breathing! Now my sarcoid is back active and that's what has me concerned about the lupus on top of it all! Is it something that happens...sarcoidosis AND lupus together?

November 12, 2018
A MyLupusTeam Member

Yes, I was recently diagnosed with Systemic Scleroderma and Interstitial Lung Disease... I have had a multitude of lab work, chest x-ray. CT Scan and Pulmonary function test. Just getting my primary doctor in board as my Rheumatologist won't treat my lung involvement. Very frustrating! I have had Lupus SLE and Reynauds for almost 20 years. I'm on Plaquenil, Cellcept, Amlodipine and meds for anxiety. Super fun!
Best wishes to you.

July 12, 2023
A MyLupusTeam Member

I have Systemic Scleroderma with Interstitial Lung Disease. Had a CT scan yesterday, pulmonary function test on Monday. It's not a good diagnosis.

July 1, 2023
A MyLupusTeam Member

Yes I have pulmonary fibrosis short of breath usually worse at night inhaler daily does help. Scared as it something that is not going away-chronic

December 31, 2018
A MyLupusTeam Member

I have interstitial lung disease as well as scleroderma, artherlascrosis, copd, asthma which affect the lungs. Am now on oxygen

November 10, 2018

Related Questions

View All
A MyLupusTeam Member asked a question 💭
Tawas City, MI

A MyLupusTeam Member asked a question 💭
Moncton, NB

A MyLupusTeam Member asked a question 💭
Canton, OH