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Brinsupri experience after 3+ months

MAC & Bronchiectasis | Last Active: 1 day ago | Replies (44)

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@robot Should we be tested for this gene mutation before taking Brinsupri?

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Replies to "@robot Should we be tested for this gene mutation before taking Brinsupri?"

@melinda561 based on how I read the warnings one would know at an early age if you had the syndrome, but best to consult doctor.

@melinda561 from what I understand the majority of people with papillion lebevre begin showing signs of the disease before age 5-7 years old. So if you havent had problems in past, most likely you do not have this genetic disorder. But it does not mean you cannot have skin or dental side effects - there’s a slight possibility. It is still prudent to have regular dermatology & dental exams - at least yearly, or if you have issues with skin or dental. I see my dentist every 6 months for cleaning & exam & dermatologist yearly. It’s important to educate your drs about brinsupri & side effects. Printing out a one page brinsupri information sheet from insmed website for your doctors is advise- able.