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Brinsupri and hair thinning

Posted by jfull57 @jfull57, 3 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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Cathln | @Cathln | 8 hours ago
In reply to @jfull57 "I’ve been on 25 mg for six months and I haven’t seen any lessening of my..." + (show)
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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.

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@jfull57
After I posted this I had a bleed. First one in years. I am by no means blaming the drug, but my cough is not any better, some days worse. Doctor told me to stop clearance for few days. I will start again today.
I am no better since starting drug. Maybe takes a year or more, but I can't do another six months to see.
Yes, I was on 10mg.

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Cathln | @Cathln | 8 hours ago
In reply to @tconz "@Cathln I have been on 25mg for 1 month and have had 5 squamous cells which..." + (show)
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@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 I had the hair loss since starting. I had some hair fall from natural ageing, but this is not natural or normal.
I had the skin cancers before starting. The bumps and hard rough spots that appear on legs start out pinkish but are rough. They haven't changed, but I did not have them before.
My cough and mucus are exactly the same as before.

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ingrid1947 | @ingrid1947 | 8 hours ago

Yes, I remember hair loss listed as a side effect of Brinsupri in the info. Why I told my pulmonologist I hesitated to take it, along with skin side effects. I have had very thin and dry skin, so not much skin already, dry eyes, and I've lost 20 lbs, over the years since being diagnosed with Bronchiectasis and MAC in 2008. So my hair is about the only normal to me looking thing I have left! I did begin taking it in May and right away noticed skin effects, i.e. dryer, and an acceleration of acetic keratosis and larger ones. In July the skin on my feet started peeling in thick dry places.
No hair loss so far. But I'm not noticing much lung improvement either.

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tconz | @tconz | 7 hours ago
In reply to @Cathln "@tconz I had the hair loss since starting. I had some hair fall from natural ageing,..." + (show)
Profile picture for Cathln @Cathln

@tconz I had the hair loss since starting. I had some hair fall from natural ageing, but this is not natural or normal.
I had the skin cancers before starting. The bumps and hard rough spots that appear on legs start out pinkish but are rough. They haven't changed, but I did not have them before.
My cough and mucus are exactly the same as before.

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@Cathln are you on 25 mg and how long have you been taking Brinsupri?

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Terri Martin, Volunteer Mentor | @windwalker | 7 hours ago
In reply to @ingrid1947 "Yes, I remember hair loss listed as a side effect of Brinsupri in the info. Why..." + (show)
Profile picture for ingrid1947 @ingrid1947

Yes, I remember hair loss listed as a side effect of Brinsupri in the info. Why I told my pulmonologist I hesitated to take it, along with skin side effects. I have had very thin and dry skin, so not much skin already, dry eyes, and I've lost 20 lbs, over the years since being diagnosed with Bronchiectasis and MAC in 2008. So my hair is about the only normal to me looking thing I have left! I did begin taking it in May and right away noticed skin effects, i.e. dryer, and an acceleration of acetic keratosis and larger ones. In July the skin on my feet started peeling in thick dry places.
No hair loss so far. But I'm not noticing much lung improvement either.

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@ingrid1947
Hi there. Sorry to hear about the side effects you are experiencing from the Brinsupri. I was put on it last March and it made a world of difference for me. It stopped the huge amount of phlegm I was choking on daily. My hair is thick but has always been falling out, and my skin has always been very dry. If these are side effects for me; it is my normal. Are you going to stop taking this med?

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ingrid1947 | @ingrid1947 | 5 hours ago

I'm waiting to see if the side effects get worse or better and whether the drug starts helping me more than the side effects bother me. I see my Dr. again in Oct.
Thanks

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Cathln | @Cathln | 4 hours ago
In reply to @windwalker "@ingrid1947 Hi there. Sorry to hear about the side effects you are experiencing from the Brinsupri...." + (show)
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@ingrid1947
Hi there. Sorry to hear about the side effects you are experiencing from the Brinsupri. I was put on it last March and it made a world of difference for me. It stopped the huge amount of phlegm I was choking on daily. My hair is thick but has always been falling out, and my skin has always been very dry. If these are side effects for me; it is my normal. Are you going to stop taking this med?

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@windwalker If I thought after 6 months that there was any change, especially in cough or mucus, I might keep taking it and see. My doctor took me off. I feel lousy about it. Seems like every thing I take has bad effects
I really wonder what makes these side effects happen? What about the things I can't see? So, yes I guess I'm done.

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