Early ILD

[luna_lovegood]

Hello! Thank you to all who responded to my previous post. I have received a letter from my rheumatologist that he has reviewed all of the baseline diagnostic test for monitoring my Scleroderma and found out from the CT scan that I am showing early signs of ILD (Interstitial Lung Disease), I am on my mycophenolate and nifedipine for Raynaud's. I will discuss my results with him soon but I am worried and overthinking about having ILD. For those who experienced ILD, did it become so bad for you? What sort of treatments did you receive?

[Pomoc]

You are in a v similar position to my wife when first diagnosed with SSD, ILD and Raynaud's, though it took them 18 months to realise it wasn't bronchiectasis. DON"T go Googling it, the prognoses sound much worse than it is for most, and fortunately the lung fibrosis progression has halted after 12 months of mycophenolate, or it could just be the pattern that in some cases sees only the first 2 years with such damage, often.

[Whistler81 in reply to Pomoc]

Ditto, I also have SScl but was initially told I had lung fibrosis. However mycophenolate has resolved all appearance of fibrosis. Never felt breathless but still super encouraging to hear that the early worrying lung appearance has gone. I’m also an insulin dependent type 1 diabetic (late onset) but recently have needed less and less insulin. Mycophenolate having a hidden benefit?

[Athena2023]

Hi luna_lovegood

I have SScl and ILD and was put on tocilizumab and nintedanib, unfortunately none of these medications worked and scarring of the lungs have increased significantly.

I am pleased to see that it has worked for some and lets hope it works for you🙏