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Prognosis

MAC & Bronchiectasis | Last Active: Feb 9 11:32pm | Replies (27)

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@lvnl

@strong4130 hello, you have found such a helpful place for shared support and information.
It sounds like you and I have some similar issues (except that I'm 69, not 42 :-)). I too have inflammatory bowel disease, successfully treated with the biologic humira for 8 years. There is an association between bronchiectasis and IBD which is not well understood, particularly Crohn's. And bronchiectasis can be triggered by an autoimmune process too. Many of us with one autoimmune condition end up with other autoimmune issues.

Humira and other biologics do suppress immunity as I'm sure you know. My bronchiectasis was asymptomatic until I was diagnosed with MAC almost a year ago after developing a chronic cough. No other symptoms, so despite a mild case my now-doctors (bronchiectasis/MAC specialists) recommended treatment because immune modulators may make us more vulnerable to aggressive progression of the MAC. And no one wants to take me off Humira. I did not have to think too long to agree with this plan.
The dx of MAC/bronchiectasis is a shock. I wasn't even referred to a pulmonologist for my bronchiectasis & only decided to get to one on my own steam to get an opinion on going on Humira with bronchiectasis (I was cleared). I had no idea until MAC was suspected about airway clearance & best practices in treating bronchiectasis, and I don't think my then-PCPs did either.

It may not feel like it now, but it sounds like you may be fortunate in getting diagnosed relatively early in the process and able to develop your best plan together with your doctors. And this is a time when there are more studies and growing interest.

Keep in mind that it is folks with issues they need help with who will post online the most. (When I was considering a smart vest, I was discouraged by the problems I read about here so I posted asking if there were any positive smart vest experiences & got several enthusiastic & reassuring responses (and my vest story is positive too).

MAC is challenging to treat but it IS treatable and the stories are not all bleak as you will see here. My docs tell me that most people tolerate the antibiotics well, and so far, in month 5, I have no side effects other than mild nausea for a couple weeks after I started.

So give yourself space to process what is happening and know bronchiectasis and MAC are different for everyone. A poor prognosis is not at all inevitable!

Keep us posted ok?

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Replies to "@strong4130 hello, you have found such a helpful place for shared support and information. It sounds..."

Thank you SO much for this post. I’ve read and reread it several times. I don’t have time to write as much as I’d like, as I have to get up very early, but will respond more as soon as I can. Truly, thank you. Your post brought me some strong hope at a much needed time.