Interstitial Lung Disease and Autoimmune Diseases

I have seen Rheumatologist from the start of PMR and for being on Pred for 3 years. Just off Pred in March and all these symptoms came back after it was dc’d. Not happy about going on Pred and then stronger med. Will try and get 2nd opinion this week. But

Have you had any side effects from Cellcept? That’s my next round of meds after prednisone.

Any side effects from Cellcept?

Hi @spiritnsoul, That would be me. I was diagnosed with RA in 2014, but most likely had it well before then. I have Interstitial Lung Disease and Pulmonary Fibrosis. I was still working in 2023 and now I am on oxygen 24/7. How can something happen that fast. For me who when 100 miles an hour and now even on oxygen my oxygen drops. I can’t even finish the 6-minute walk test. I try so hard to be positive, but days are harder than other. How are you doing?

My husband has polymyositis ILD
anti PL12 and anti Ro 25 positive and on steroids cellcept tacrolimus Rituxan and Ofev nothings working
It just keeps progressing anyone else ?

I was diagnosed with ILD associated with primary Sjogrens Disease in October 2025. My PCP referred me to Mayo Rochester pulmonology after I had sudden onset of shortness of breathe and cough following a bad flare of Sjogrens. Very hypoxic, Extreme joint pain and Fatigue, rapid weight loss. My ILD at initial Dx is severe for diffusing capacity so I’m on O2 for any exertion and sleep. Was able to get respiratory vaccines done before starting rituximab in Dec. Down to last week of tapering down prednisone and hopeful that the rituximab will prevent further lung damage.

I’ve been isolating at home during this winter flu etc season. I used to be 67 going on 57, now feel like 68 going on 88! Anyone on here treat CTD-ILD w rituximab? Any helpful tips on managing severe ILD with pulmonary rehab? I’m doing well with my portable O2 and keeping my pulse O2 reading around 95 but would like to slowly increase activity. Have exercised and been very active lifelong. This is tough.
Thank you!

@pschulte Hi there, so sorry to hear that. I am in the course of being diagnosed with a fibrotic ILD...see my specialist 11 March. Am in Western Australia. I think I have always been a shallow breather and got used it it...my lung function has dropped a litre in recent years. Severe SOB was triggered last year and has continued on a relatively regular basis...to the point I went to the specialist and am ending up with this diagnosis. Like you I have been very active and pretty fit. 75 yo.

Is there anything you can do?

Have you heard of the work being done in China and USA re turning the lung cells on to repair rather than defend?
https://scitechdaily.com/a-cure-for-copd-transplanting-patients-own-lung-cells-shows-great-promise/

@loriach

I feel for you...in similar position, but 75yo. Have Bronchiecestasis, Asthma and it seems now fibrotic ILD caused by auto immune. Very hypoxic at times worse than others...weight loss and now fatigue. Waiting for spec. appt on 11 March to interprec HRCT and other results. I am in Australia and not looking forward to winter.

However, something I have been doing for 3 yrs is nebulising with 7% hypertonic saline to clear the lungs - chronic cough here with 3 cups of rubbish from the lungs daily. The airways clearance helps. There is also an autogenic drainage app online if you have rubbish in your lungs to clear.

Thinking of you. We need to support each other. Take care.

Here is another advance which is hopeful:
https://www.drugtargetreview.com/news/169116/rapid-cell-reprogramming-creates-lung-like-cells-to-combat-copd/

Does anyone else have a diagnosis of ILD (auto immune type) with regular SOB. The marker for mine shows it as a fibrotic disease - if that is helpful. Trying to learn all I can about what I can do.