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Brinsupri follow-up

MAC & Bronchiectasis | Last Active: 15 hours ago | Replies (333)

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Profile picture for mariegrace @mariegrace

It does. Be careful.

My doctor ordered it but have not taken it yet because I am dealing with loss of my husband.

She said I could start it end of the year but Idont know if I will.
Hearing reports of hearing falling out, BP going up and skin cancers.
I have a history of squamoys cell on my nose.

All this for a 20% reduction in symptoms after 1 year!

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Replies to "It does. Be careful. My doctor ordered it but have not taken it yet because I..."

@mariegrace I am so sorry for your loss. Sending you a big warm hug and comforting thoughts.

@mariegrace
Does your doctor said it causes skin cancer or you have read somewhere ?

@mariegrace
I see the skin cancer was mentioned in the package insert. The incidence was 0.5% and 1.9% for 10mg and 25mg, respectively, 1.1% in placebo.

@mariegrace Marie it’s hard to make decision after your loss. A big hug for you.
Yes 20 % seems to be not a lot but every time even one time you get sick your lungs get worse. So I would at least try to take it and see how you react to the medication and you can always stop it. Again I am very sorry for your loss.

@mariegrace First and foremost, I’m sorry for your loss. I also have similar concerns about starting this medication. I am colonized with pseudomonas and have read that the medication may improve symptoms by 20%. In addition, I could develop pneumonia as one of the side effects. I’m 75 and don’t know if the benefit out ways the risk for me personally. I’ll be in touch with company pharmacist to address my concerns. I’m only in the beginning of the approval process.