@narelled23 yes, I’m an open book and you can ask me anything!:) I’ve been right where you are and I know how scary it is while you’re waiting to find out the underlying cause of your ILD. You can’t control what your body is doing to you but you can control what you think about! As it turns out my ILD is caused by my immune system attacking my lungs. It’s lung dominant but also have an overlapping dermamyositis myo marker with symptoms that manifest as what they call “Mechanics hands”. The jury is still out how much of the scaring in my lungs will be permanent. But after 6mos of treatment and 3-4 6min walk tests and 4 PFT’s my pulmonologist is continuing to see
A trend towards disease improvement and control. With no signs of scarring progression. For a couple months I had to go on oxygen concentration machines while we figured out the diagnoses and treatment plan. But I haven’t used them since last September due to the improvement and stability. I’m fortunate in that the PL7 autoimmune variant responds well to broad based immune suppression medication. I am keeping in eye on CarT and IL2 immune regulating therapies.