Brinsupri and hair thinning

Posted by jfull57 @jfull57, 4 days ago

After 6 months on Brinsupri I have hair thinning, I’m not sure if that’s what’s causing it though. Has anyone else experienced this?

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Profile picture for tconz @tconz

@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?

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@tconz Yes, I was on 10mg. I am not a good candidate for any medication. Either, allergy, or sensitivity to them. I stayed on it 6 months hoping for some improvement, I didn't get any. So, I just could not stay on it and wait any longer.

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There seems to be two camps with those taking Brinsupri (brensocatib). One camp where it is working miracles and the other camp where it is basically not helping at all. This seems to be illustrating the diversity of Bronchiectasis. For me it is working miracles and it is painful to read that it is not working for all of us. Maybe the new medications in the research pipeline will be the difference for more Bronchiectasis patients. I sure hope so.

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Profile picture for katmckay @katmckay

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.

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@katmckay I did not go on brinsupri. I get side effects to so many meds. I had called an spoken to the specialty pharmacist and she reiterated to me that the main side effects is thinking of skin causing skin cancer and that they have had patients mentioning hair loss which they say may be contributed by brinsupri.

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Profile picture for vstankie @vstankie

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.

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@vstankie I am very happy for the ones who are getting improvement on brinsupri. I will not try it do to the side effects of skin cancer. Ive had my share of side effects and seem to be clearing my lungs very well with the nebulizing and vest and breathing techniques

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Sorry to hear about those effects, I’ve been on Brinsupri 10 mg for 6 months, I already had thinning hair before I’m 83, to avoid further thinning I started to take Hair growth supplements by Natures Bounty, it seems to help me.
With Brinsupri I have more energy, phlegm wise some days are less some days are more, coughing less, although it did not help my O2 saturation ,most of the time below 90%, so I use oxygen most of the time and on all night , then last month my pulmonary doctor wanted to try Yupelri nebulize daily , discontinue the Albuterol , continue with the saline and airway clearance, I responded well, my O2 sat at 92-93 I more energy able to do more housework
Using less oxygen, though I continue to use oxygen at night. I continue with Brinsupri maybe the 2 together helps, I don’t know. Also lots of prayers, praise the Lord !

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Profile picture for ja24 - Jeannie @ja24

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.

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@ja24 I believe it has been noted as a possible side effect. And yes, I have noticed more hair loss lately, but I don't recommend stopping it without consulting your doctor. I almost regret starting it.

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Profile picture for kpger @kpger

@ja24 I believe it has been noted as a possible side effect. And yes, I have noticed more hair loss lately, but I don't recommend stopping it without consulting your doctor. I almost regret starting it.

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@kpger - I definitely won’t stop taking it as my Mayo Clinic pulmonologist is pleased with the results I am getting from the Brinsupri. I am just disappointed about the hair thinning but so far I have no bald spots. Wishing you the best.

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I have been on Brinsupri since January (7 months) my side effects started right away and started with the red blotches on legs and very dry skin my dermatologist is treating with chemo cream go back in September and see what’s next. I’ve progressed to sinus issues, burning/dry blurry eyes, hair loss, pealing skin on feet, and mouth issues and stomach issues. My breathing and phlegm issues are better however now I’m having all over body aches. I’m now in the process of getting into UT Southwest Bronchiectasis Treatment Center because there has to be a better way to live with Bronchiectasis. I’ve had all listed side effects plus some that are not listed.

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