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← Return to Brinsupri and hair thinning
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MAC & Bronchiectasis | Last Active: 7 minutes ago | Replies (9)
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I've been on brinsupri since last.November. I've also had hair thinning mostly on the very top of my head. I didn't connect it to the brinsupri, till I started reading others having the same experience.
I've had such great improvement in my lungs that stopping the brinsupri is not an option for me either. My last CT it showed airways that are open now that were plugged before. I'm not coughing constantly, and I'm bringing up very little mucus. My pulmonologist insisted though, that I continue with my airway clearance.
Replies to "I've been on brinsupri since last.November. I've also had hair thinning mostly on the very top..."
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@vstankie
I have had hair loss since the second month. I have been on Brinsupri 6 months, and my hair loss is noticable now. I called Panther, and they said you have to have round bald spots for it to be alopecia, which is a rare side effect. They didn't connect mine to Brinsupri. I do!
I also have these funny things on my legs. Not blisters, but the skin falls off and there is a raised bump. I did have rashy itch on arms, but that might have been allergy to new skin. Dermatologist had no idea what these were.
I asked Panther and they said, It will take at least 52 weeks for them to disappear. I was very confused by that!
My mucus and cough are the same, maybe worse some days. My Pulmonologist took me off on Friday.
I will see if my hair loss stops , and whatever is on my legs goes away. Maybe cough and mucus would have gotten better on 25mgs, but I don't want side effects to get worse. I've had 3 Mohl surgery for skin cancer already.
Anyway, that's my story on Brinsupri. I must add that I am either allergic, or very sensitive to over 30 drugs, so I guess this is another sensitivity.
I had such hope for this drug. I'm not young. I've had MAC for years, not treated. I'm going to NJH probably in fall. Just started the process this week. I was treated there for two other NTMs. I could handle the drugs then. Now, I don't know.