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kathyjjb avatar

Anyone taking Brinsupri with current NTM disease?

MAC & Bronchiectasis | Last Active: Jun 23 11:48pm | Replies (8)

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@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

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Replies to "@kathyjjb Hi... I looked up actinic keratosis lesion after seeing your post. I believe that is..."

@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.