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

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Adult Cystic Fibrosis

Rio11
Rio11

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?

6 Replies
oldestnewest

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
Rio11 in reply to tbeth

Pretty rare from what I'm finding out.

GAtherton
GAthertonAdministrator

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
Rio11 in reply to GAtherton

I have 2 mutations including F508 and a spliced mutation.

tbeth
tbeth in reply to Rio11

Thank you for sharing. Good luck with your treatment.

tbeth
tbeth in reply to GAtherton

Thank you for the information.

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