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MAC with Interstitial Lung Disease

Posted by ginnysc @ginnysc, 3 days ago

I've been treated for MAC for a year. My pulmonologist referred me to a rheumatologist due to severe Reynauds. He has diagnosed "Systemic sclerosis, Limited Type" and Interstitial Lung Disease. He will wait on treatment until after MAC is resolved. I just had a bronchoscopy so should know in a few weeks about the MAC. Has anyone had experience with MAC and ILD together?

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Mentor
Sue, Volunteer Mentor | @sueinmn | 2 days ago

@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.

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1 reply
irene5 Irene Estes | @irene5 | 2 days ago

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

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ginnysc | @ginnysc | 1 day ago
In reply to @sueinmn "@ginnysc Actually having Interstitial Lung Disease (ILD) is a risk factor for MAC/NTM just like Bronchiectasis(BE)...." + (show)
@sueinmn

@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.

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Thanks, I didn't know that it was a common complication!d

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ginnysc | @ginnysc | 23 hours ago
In reply to @irene5 "Yes, you are correct Sue. I have both and Raynaud’s too. I was diagnosed with Raynaud’s..." + (show)
@irene5

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

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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!

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1 reply
irene5 Irene Estes | @irene5 | 19 hours ago
In reply to @ginnysc "Is the ILD being treated? Or just the MAC? My rheumatologist said that he plans to..." + (show)
@ginnysc

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!

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@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

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