Brinsupri and hair thinning

Yes, many people have posted about hair loss. We all hate it but Brinsupri has made such an improvement in how I feel that stopping it is not an option for me.

I have also been on Brinsupri for six months and have been losing a lot of hair. Makes me wonder if that is the cause, even though it has not been listed as a side effect.

I have been on Brinsupri 10mg since November. I have had an increasing number of skin rashes, new spots, and dry/scaly patches. I have also had hair thinning for the past four month that is getting worse, despite using topical minoxidil and supplements. My pulmonary doctor referred me to the affiliated speciality pharmacy that provides my Brinsupri. The pharmacist says the hair thinning/loss is not a side effect of the drug. I had normal and minor hair thinning for my age prior to taking Brinsupri. The dermatologist doesn't think the hair loss is related to Brinsupri because he read the description of side effects and didn't see it listed. If the drug can affect my skin to such a great degree, why not my scalp? The topical minoxidil is messy and hard to control where it goes. I tried the pill form in a very low dose but had an immediate reaction. It is also risky for someone with PACs/PVCs and GERD. I haven't tried to contact Insmed about the hair loss issue but suspect they are hearing about it from other users.

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.

@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.

I’ve been on 25 mg for six months and I haven’t seen any lessening of my cough or mucus. I will discuss with my pulmonologist but I think I’ll stop Brinsupri.

On the Brinsupri.com site, they do mention alopecia as a less common side effect. I noticed several of the instagram dermatologists are recommending a combination of minoxidil foam application mixed with a trentinoin cream . You might want to research this and be sure to speak with you medical team before starting this type of treatment as there may be contraindications.

Warm regards,
Linda Esposito

@Cathln I have been on 25mg for 1 month and have had 5 squamous cells which included 2 Mohs surgeries so far on my fingers which has been very painful. The other 3 are on my legs and the dermatologist is doing chemo shots on those. I have also noticed some hair loss as well. Did you have all the issues you mentioned on 10mg?

@katmckay you need to read the brochure that comes with your medication, it list both skin problems, thickening(hyperkeratosis) high blood presure, hair loss (alopecia) dental issues along with several less common side effects. I have had many of these issues.