Adult Cystic Fibrosis: Well, first came... - Aspergillosis and...

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Adult Cystic Fibrosis

Rio11 profile image
6 Replies

Well, first came chronic Pancreatitis 36 yrs ago, followed by recent Bronciectasis and ABPA.

And now the the bomb shell: Adult CF. It sure connects a lot of dots. But a new set of obstacles.

Being tapered off the Prednisone and eliminating the anti-fungal Isavuconazole. Seeing if I can qualify for Nucala (mepolizumab) and seeing CF specialist on the 22nd. Anyone else sharing this boat?

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Rio11 profile image
Rio11
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tbeth profile image
tbeth

I have bronchiectasis and they tested me twice for Cystic Fibrosis with negative results. Having a diagnosis is good. Isn't Adult CF rare? Good luck with the specialist.

Rio11 profile image
Rio11 in reply to tbeth

Pretty rare from what I'm finding out.

GAtherton profile image
GAthertonAdministratorFungal Infection Trust

CF is caused by mutations in one gene but there are 1500 known different mutations. Very complex and vastly differing impact on the lives of people who live with it depending on the specific mutation cysticfibrosis.org.uk/about...

Rio11 profile image
Rio11 in reply to GAtherton

I have 2 mutations including F508 and a spliced mutation.

tbeth profile image
tbeth in reply to Rio11

Thank you for sharing. Good luck with your treatment.

tbeth profile image
tbeth in reply to GAtherton

Thank you for the information.

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