1. < MAC & Bronchiectasis

Mac-Bronchiectasis + Humira?

Posted by lvnl @lvnl, May 12 9:25pm

Hi, new here. Thanks for the help you all give.
Anyone else here on Humira (or any other TNF-blocker) dx with MAC &/or bronchiectasis? Did you have to get off it?
I have had asymptomatic bronchiectasis for 12+ years & then 8 yrs ago was diagnosed with Crohn's and have had almost-remission with Humira all these years. I was recommended by my NYU Medical Center Crohn's dr to see Dr Adrizzo-Harris. They share some patients cuz Crohn's & bronchiectasis can be connected, numbers of people have both. I know there are others here who see her -- one of the world-renowned experts. Finally started coughing up sputum once they had me do lung clearance chest therapy (HIGHLY recommend this if you aren't doing it, & best to learn it from a therapist if you can get to one). So my series of 3 sputum samples has turned up one positive culture for MAI. You all probably know you need 2 samples for definitive dx, so tomorrow I submit another sample. If I do have it, it's mild. But still not good!
Anyone else here with MAC (or MAI) who is/was on Humira? Or another immune suppressant? Did you have to go off it? I read that MAC is showing up more now that more people are on immune modulators.
For all the years I've been on Humira, I never have gotten more infections than most people. Except I have had Covid 3 times -- once before vaccines were available, and 2x since, despite being fully vaxed. Wondering if this jump-started the bronchiectasis & maybe-MAI getting more active.
Thanks again everyone.
Linda

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

maryjanechilds | @maryjanechilds | May 13 7:03am

I was on Humira for rheumatoid arthritis and had to stop it when I began treatment for MAC. Since Humira suppresses your immune system you must stop it in order for your immune system to fight the disease.

REPLY
lvnl | @lvnl | May 13 9:46pm

Thank you Mary Jane! This is what I'm afraid of. We'll see whether I get a second positive result for MAC & then go from there. If you don't mind me asking, did you find any other effective treatment that you could be on while treating the MAC? I know bronchiectasis has some association with Crohn's & RA, so there must be more experience out there.

REPLY
1 reply
maryjanechilds | @maryjanechilds | May 14 8:43am
In reply to @lvnl "Thank you Mary Jane! This is what I'm afraid of. We'll see whether I get a..." + (show)
@lvnl

Thank you Mary Jane! This is what I'm afraid of. We'll see whether I get a second positive result for MAC & then go from there. If you don't mind me asking, did you find any other effective treatment that you could be on while treating the MAC? I know bronchiectasis has some association with Crohn's & RA, so there must be more experience out there.

Jump to this post

I have been taking Low Dose Naltrexone. I’m not sure how much it is helping since I am just getting over a bad flair but I would suggest you look it up and read about it.

REPLY
lvnl | @lvnl | May 14 9:51pm

This is very interesting, thanks. I hope you can get through treating the MAC without the RA roughing you up any worse.

REPLY
Please sign in or register to post a reply.