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Anyone taking Brinsupri with current NTM disease?
I'm on Brinsupri and have M. Abscessus (watchful wait) and though I feel so much better since I started the Brinsupri, I am concerned about potential unknown impacts to the immune system. I have asked both my local and NJH ID doctors and both responded, "we don't know". My Pulm Dr thinks it will help since it lowers inflammation. Just curious if anyone has been evaluated (CTs and or sputum) to see if there has been any NTM progression since starting the Brinsupri-particularly, if it has been stable for a long time. My MABC has been stable since Sept 2024 but don't have my next CT until October.
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Yes I started Brinsupri 3 mos ago and Absessus being watched for about 2 years. I have my next cultures in October. I will ask my ID Dr. the same question. And my pulmonologist again when I see him. He told me that he has another patient with BE and Abscessus that began Brinsupri last year and it is helping him. But don't know about his NTM status either. Since the NTM seems to come and go anyway I wonder how they would know except from a long term study. My ID Dr. kind of always preaches quality of life and I guess we need to also weigh that. I am feeling better with less mucus and coughing since Brinsupri but I have skin and liver side effects. I am 78 and have had the BE/NTM diagnosis since 2008. I've had MAC treated twice and another NTM twice, but my Drs. have held off treating the Abscessus because the treatment is so horrendous.
@ingrid1947 Thanks Ingrid! Your situation with the Abscessus sounds much like mine. Though, I've never had MAC, just the Abscessus and currently just the skin issues. I am leaning towards at least trying the 10 mg but will wait until my follow up next month. I agree with your ID doctor about quality of life, it's a balance. Good luck to you and let's just hope and pray we both are able to avoid the RX. I'm sending in sputum samples to NJH every 3 months. I really like their lab since they do the colony counts.
@kathyjjb
Thanks for your reply and support. What skin issues do you have and is that why you are thinking about 10 mg?
Hi Ingrid, I have a small area on my back that's dry and itchy and I have already had an actinic keratosis lesion removed. It's really a combination of the skin issues and the fact that there just isn't any information out there that supports no repercussions to those of us with NTMs. That said, less inflammation and less mucus is a good thing for us with NTMs. So, I will talk to my Pulm doctor next month but may wait until my October CT before I make the decision.
@kathyjjb Hi...
I looked up actinic keratosis lesion after seeing your post. I believe that is one or two areas on my back. I have a couple of skin issues that I see the dermatologist for. I was diagnosed with atopic dermatitis/eczema at the same time I was diagnosed with BE.
I don't know for sure but I have a feeling some of us develop skin conditions with the infections themselves. Mine so far, it is just Intercellulare, that I have.
Since having started with a new pulmonologist they are also testing for fungal issues with the sputum. Surprising to me with the two I have sent in so far....three different types of fungal infections have been declared by the labs. So far it appears the doctor, pulmonologist, doesn't think much of it since I have not had a message from him. I see him in the fall and will ask then since I feel OK...except for the energy given to the daily BE mucus clearing sessions and how I feel afterwards. It can drain me somewhat.
Also, as said before, I am not on any medications so I can't blame medications for the skin problems. I also don't think the dermatologists fully know the why and cause of the skin conditions. No blood tests or sputum tests performed by the dermatologist.
Has your dermatologist done blood tests or sputum tests? 🤔
Barbara
@blm1007blm1007 Hi Barbara, I wouldn't be surprised if there's a relation with Bronchiectasis and skin issues like eczema, since they are both a result of inflammation due to overactive immune system. So, absolutely! But in my case, I'm pretty sure it's the Brinsupri just based on the facts that my skin issues are listed as side effects, and it all started just a few weeks after I started taking the drug. The real test would be to see if I stopped itching after I stopped taking. But since I am benefiting from the drug, the most I would do at this point, is reduce my dose from 25 mg to 10 mg. That's weird, 3 different types of fungus and they're not concerned? My Derm has never run tests other than skin biopsy. My Pulm, PCP, and ID run all the blood and sputum tests.
@kathyjjb Yes, very strange ....First that no other pulmonologist tested for fungus with the sputum submitted.
My Dermatologist has only done the skin biopsy also. I am going to mention the findings to my Dermatologist to see what she has to say.
Barbara
I have had yeast show up before but not in the last 2 cultures. Fingers crossed it stays that way. And only 1 of 3 of my doctors mentioned it. Why would you talk to the Derm Dr about fungi in sputum cultures?