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Mac-Bronchiectasis + Humira?
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
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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.
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.
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.
This is very interesting, thanks. I hope you can get through treating the MAC without the RA roughing you up any worse.
My father is in a similar situation. He's been taking hydroclornique for his RA for many years! Unfortunately, he now has MAC (age 74). He can't get of his RA drugs because of his RA symptoms. But he continues to lose weight and gets sick often with pneumonia. We need help.
Hi @slakhani, this doesn't sound easy. My Crohn's doctor and Dr. Addrizzo-Harris, who is my bronchiectasis & MAC doctor and is one of the prominent experts, both want me to stay on the Humira because it has kept the Crohn's almost entirely in remission for 7 years. Dr. Addrizzo says being on an immune modulator or suppressant is an indication FOR the antibiotic treatment since you are higher risk for more rapid MAC progression or even disseminated MAC, which is when it spreads to other organs and can be even more serious. Have you and your father discussed the bronchiectasis / MAC treatment options with his pulmonologist and with his rheumatologist? Can you get them to consult each other? (My 2 doctors share other patients in the same situation and work together on these cases.)
I am going to start antibiotics in coming weeks. Right now I'm in the screening phase for a trial that includes either inhaled Amikacin or placebo, + oral azithromycin + oral erythromycin 3 times a week for a year. If for some reason I don't qualify for the study, I will still be treated with antibiotics. I'm boning up here on the probiotics that can best help so the antibiotics don't in turn mess with the Crohn's.
You can read here about the "Big 3" which are standard antibiotic treatment for MAC, if you aren't familiar. People here have varying experiences with being on 3 antibiotics for a year, but it sounds like exploring your father's treatment options is very important if that hasn't been done yet.
All best wishes, share what happens.
The RA keeps deferring to the respirologist, saying that fibrosis in the lungs is not his specialty. Unfortunately, the respirologist is not very versed in NTM, he's been trying to pull a team of specialists together but no NTM specialist is interested in taking on his case.
We've finally made some progress, literally last night through our own contacts to have him referred to an NTM specialist. Hopefully she can then find us an RA specialist willing to work with her.
Whew, hope things go well.