Interstitial Lung Disease and RA
Hi everyone. I was FINALLY diagnosed last week with Seronagative RA. I was diagnosed during the first months of Covid with having the ILD. Noone knew where that came from, now the consensus is that the RA caused the ILD and that I've been sick with RA for a minimum of 15 years. My Rheumatologist has started me on one dose daily of AZATHIOPRINE/IMURAN.
My ILD is progressing, my last CT from March showing lots of inflammation. US of my hands, wrists, ankles, and toes showing extreme inflammation.
My question is this....should I be hit with aggressive treatment to help my lungs?? I dont want to wait any longer to try to control/ mitigate this disease. I need help soon.
What do you think? I invite opinions, experiences, whatever you've got!! I'm scared and too young, 61, to let this continue the way it's been.
Thanks Teresa! Eaglemom
Eaglemom: I am so glad you joined us. I am also terribly sorry that you find yourself in this situation. ILD is nothing to mess with so I understand your concern. Unfortunately however we will not be able help with our decisions. We are not physicians and for that reasons we are prevented form giving anything that might appear to be medical advice. This is for you protection since your doctor is best to advise you on medical issues.
rick - moderator
Are you seeing both a Pulmonologist and Rheumatologist? I wonder if that would be helpful? It's incredible that your year of Covid includes ILD and RA! I hope the recent diagnosis enables you to get targeted treatment and feel better soon. Please keep us updated on your journey. This community cares and wants to support you! With Hope and Best Wishes, Jo (moderator)
Hi Eaglemom. Sorry you are having these issues. I wanted to touch on what Jo Johnson said about seeing both a pulmonologist and rheumatologist and add that it can be important to get these specialists to communicate and work together. This may be of particular importance when it comes to RA induced interstitial lung disease. I found this article which discusses treating RA-IDL: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7230307/. It notes that "to treat ILD secondary to RA is not the same as treating RA in patients with concomitant ILD." The authors also discuss that some RA medications "have been implicated in the development of drug-related pulmonary toxicity with conflicting data." Concerning aggressive treatment of the RA, this article certainly indicates that the treatment direction has to be guided by the implications for the lung condition, as well as the RA. Hopefully your doctors can offer further information on balancing the treatment. Please feel free to keep us posted on how you are doing. This community is here for you. Best, Richard (RheumatoidArthritis.net Team)
Hi, Teresa, I myself do not have ILD [I do have COPD along with RA, so I can appreciate the breathing difficulty]. However, almost 20 years ago my close friend developed a hard to diagnose condition called anti_jo-1....which had a terrible effect on her lungs. It took a while to pin it down, but she also had ILD and RA.
Treatments I'm sure have changed in twenty years, but in her case, her breathing was the biggest problem, so that was the priority. They treated her with high levels of Pred; then over time they weaned her off. The Pred also helped with the inflammation/pain of RA.
Not sure this is how they treat the ILD today- it's something to discuss with your rheumatologist. But my point here is that it could be that the treatment for one disease could have a spillover effect on the other. Your rheumatologist will know.
She's doing very well today.
just wanted to follow-up on your awesome post. Thanks for sharing the insights from your friend - this is great perspective! And like you said just because this was your friend's experience doesn't mean it will match 's , but it's more anecdotal evidence that could help trigger ideas! Great post! - Reggie (RheumatoidArthritis.net Team Member) I should have added that in my case, and my friend's case, the rheumatologist always deferred to the pulmonologist.
Adding to my original post, I've noticed that when I've had to take Pred for asthma and lung issues, my RA quiets down.
