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Need drug to suppress RA that does not flare up my BE or MAI.

Posted by Dianaf @playadelcarmen, Aug 29, 2025

Have BE and MAI, both stable, for 2 years. No major flare up with Mullein,NAC and vest. 2 months ago RA appears, on steroids for 1 month, works great as short term fix. Ra Doctor trying to give me drug to suppress RA without activating my BE and MAI. Taking supplements to help inflammation, off of steroids on 9/15. Any suggestions so pain does not return, 79 in good health. Good diet, no meat only fish, Zumba,walk. Thank you, have learned so much from this site.

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lvnl | @lvnl | Nov 9, 2025

It is not at all a given that immune-modifying medications have to be stopped with BE and/or MAC. I was diagnosed with BE many years ago (what they used to call "idiopathic," meaning they didn't know why and it was asymptomatic and untreated for a long time). Eight years ago I was diagnosed with Crohn's disease and put on Humira. Humira is also commonly used for RA. The Crohn's has been basically in remission since, with just one flare. Over a year ago now, with a chronic dry cough, MAC was suspected (on CT scan) and confirmed by sputum culture. I suppose we could blame the MAC on being on an immune modulator but who knows? I already had BE and I'm 70 years old. My GI doctor & my BE doctor (at the NYU BE/MAC center) work together and NEITHER of them want me going off the Humira. In fact, at some point I may end up with a bronchoscopy with biopsies to determine if Crohn's is also driving my lung inflammation (which is a whole other story). And in that case, according to my BE doctor, it is possible they would increase the Humira, not reduce or drop it.
I believe there are others here who are on immune modulators and I also heard from someone who did go off their RA immune modulator to treat their MAC. So, it will really depend on your individual situation and your doctors' level of knowledge.
I am interested in the experiences of anyone who has traveled this same path! Thank you to all.

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1 reply
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maryjanechilds | @maryjanechilds | Nov 10, 2025
In reply to @lvnl "It is not at all a given that immune-modifying medications have to be stopped with BE..." + (show)
Profile picture for lvnl @lvnl

It is not at all a given that immune-modifying medications have to be stopped with BE and/or MAC. I was diagnosed with BE many years ago (what they used to call "idiopathic," meaning they didn't know why and it was asymptomatic and untreated for a long time). Eight years ago I was diagnosed with Crohn's disease and put on Humira. Humira is also commonly used for RA. The Crohn's has been basically in remission since, with just one flare. Over a year ago now, with a chronic dry cough, MAC was suspected (on CT scan) and confirmed by sputum culture. I suppose we could blame the MAC on being on an immune modulator but who knows? I already had BE and I'm 70 years old. My GI doctor & my BE doctor (at the NYU BE/MAC center) work together and NEITHER of them want me going off the Humira. In fact, at some point I may end up with a bronchoscopy with biopsies to determine if Crohn's is also driving my lung inflammation (which is a whole other story). And in that case, according to my BE doctor, it is possible they would increase the Humira, not reduce or drop it.
I believe there are others here who are on immune modulators and I also heard from someone who did go off their RA immune modulator to treat their MAC. So, it will really depend on your individual situation and your doctors' level of knowledge.
I am interested in the experiences of anyone who has traveled this same path! Thank you to all.

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@lvnl
I have RA and was also on Humira. My doctor told me I had to stop the Humira when I started treatment for MAC. I did fine for a few months but when I developed a pseudomonas infection and took levoquin for it my RA exploded and even with prednisone I was never able to get it under control until I finished my MAC treatment. My MAC has returned and I will eventually start treatment again and I would love to think I could do it while staying on my current RA med which is Actemra.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 10, 2025
In reply to @maryjanechilds "@lvnl I have RA and was also on Humira. My doctor told me I had to..." + (show)
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@lvnl
I have RA and was also on Humira. My doctor told me I had to stop the Humira when I started treatment for MAC. I did fine for a few months but when I developed a pseudomonas infection and took levoquin for it my RA exploded and even with prednisone I was never able to get it under control until I finished my MAC treatment. My MAC has returned and I will eventually start treatment again and I would love to think I could do it while staying on my current RA med which is Actemra.

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@maryjanechilds If I have to go on antibiotics again, I will certainly have my rheumatologist, pulmonologist and ID doc work together to determine how to proceed. Going off RA meds is not an option - without them, my hands and neck are too painful to function at this point.

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maryjanechilds | @maryjanechilds | Nov 10, 2025
In reply to @sueinmn "@maryjanechilds If I have to go on antibiotics again, I will certainly have my rheumatologist, pulmonologist..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@maryjanechilds If I have to go on antibiotics again, I will certainly have my rheumatologist, pulmonologist and ID doc work together to determine how to proceed. Going off RA meds is not an option - without them, my hands and neck are too painful to function at this point.

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@sueinmn
I’ll be very interested to see what solution they come up with.

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