MAC with Interstitial Lung Disease

@ginnysc Actually having Interstitial Lung Disease (ILD) is a risk factor for MAC/NTM just like Bronchiectasis(BE).
Some people, especially those with Rheumatoid Arthritis or whose BE is though to be caused by irritants, have both BE and ILD - the perfect storm for susceptibility to lung infections. There are some people here who have both.

Yes, you are correct Sue. I have both and Raynaud’s too. I was diagnosed with Raynaud’s back in 1982. As far as I know I don’t have systemic sclerosis, I do have BE and ILD. I have an appointment coming up this week and am interested in how my lungs are doing with these gifts that keep on giving. Happy March 1st! irene5

Is the ILD being treated? Or just the MAC? My rheumatologist said that he plans to treat it with an immunosuppressive drug, but maybe that's due to the sclerosis. I have an appointment with the pulmonologist in April and hope to get more information then Thanks!

@ginnysc my MAC is no longer being treated as it is gone. I’m guessing when you said “it” you meant the ILD?? I was never treated for the ILD. The MAC treatment was enough for me to deal with as it was long and grueling. Until I absolutely positively have to be treated with immunosuppressants or anti fibrotic medication Ginny I choose not to. But that is me. Sometimes we don’t have a choice. That was me and MAC - I had no choice but to do the medications. Your doctors should help you make the best choice for your particular circumstance. Praying for a good outcome for you at your appointment. Irene5

@ginnysc my MAC is no longer being treated as it is gone. I’m guessing when you said “it” you meant the ILD?? I was never treated for the ILD. The MAC treatment was enough for me to deal with as it was long and grueling. Until I absolutely positively have to be treated with immunosuppressants or anti fibrotic medication Ginny I choose not to. But that is me. Sometimes we don’t have a choice. That was me and MAC - I had no choice but to do the medications. Your doctors should help you make the best choice for your particular circumstance. Praying for a good outcome for you at your appointment. Irene5

Hello Irene 5 When you said you "had no choice but to do the medications" was it based on just the MAC infection, do you know? Was it based on a worse C Scan? Or do you think it was based on both? Did you have a cavity showing on the C Scan just before starting the antibiotics? Do you remember what the last sputum test result was just before you started the antibiotics?
Glad you are "no longer being treated as it is gone."
Barbara

Thank you Irene. From my research now, it seems that ILD is common with MAC and also with limited sclerosis. So now I'm thinking the immunosuppressant will be to treat the sclerosis as a whole and not the ILD in particular. I do appreciate your taking the time to answer and I'll find out more when I see the doctor.

Hi Barbara . I can’t do a sputum. Just not a spitting kind of gal:)! Much to my detriment really because I had to always have a bronchoscopy . I hate saying this , but the reason I had no choice was because I would have died without treatment. I was losing weight like it was my job, could not eat, etc etc. . I was told I was dying by my infectious disease doctor. Not all MAC cases are as serious as mine was so I don’t want to scare anyone. I did several years of pills and then Arikayce and now the MAC is gone. Mine is definitely a MAC success story. Irene5