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    Rifabutin and trikafta

    Thanks for the story. I do not have experience with rifabutin and trikafta. I do, however, have mycobacterium abscessus and take clofazimine and azithromycin. I started taking trikafta at the beginning of this year and have had a great response to the drug. I was taken off one of my mac...
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    Anxiety on Trikafta

    I'm wondering how you are doing. I hope you are feeling good after taking Trikafta like I am. It's such a good feeling when they ship for the first time.
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    Anxiety on Trikafta

    Thanks for the validation about my feelings. Your description of my feelings rings true. I have seen a therapist in the past but I have found meditation to help with my anxiety in ways therapy wasn't touching. I was surprised that I started having anxiety after feeling so much better on this...
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    Anxiety on Trikafta

    Hi everyone, I was blessed the week before Christmas with a phone call from the pharmacist at my CF Clinic in Portland telling me that the FDA just approved several more mutations that would be covered by Trikafta. My rare mutation was to be covered and to get ready to take the medication. The...
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    9 years since borderline sweat & 1 gene mutation found. Retest??

    I believe mine was done in 2016 as well.
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    Mycobacterium abscessus

    Thanks for the replies. I also had IV medications for about a year over the past year and a half. The first treatment seemed to be working until I got pancreatitis (first time in my life) from Tigecycline. That was one drug that I was not resistant to. Now I can't use that antibiotic which makes...
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    Mycobacterium abscessus

    Hi, I was diagnosed with Mycobacterium abscessus 6 years ago and have had problems with it the past 2 years. It is a multi-drug resistant strain that poses a big problem with trying to control it, let alone get rid of it. To make matters worse, I also have ABPA (allergic bronchopulmonary...
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    Cystic Fibrosis research project

    My generation was the first known generation to have CF (both me and my oldest sister). That said, there are many stories about people dying from pneumonia scattered throughout my Father's side of the family. My niece now has a son with CF. I do not know his mutations, however, and my sister...
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    9 years since borderline sweat & 1 gene mutation found. Retest??

    For years genetic testing could only detect 1 mutation for me, I then had my doctor send my sample to Johns Hopkins for a trial that would try and detect the second mutation in people diagnosed with CF with a sweat test but had only 1 detectable mutation. They were able to find my second...
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    Who are you in a nut shell

    Hi, My name is Doug I am a new member as of 12/05/19 I am 54 years old and was diagnosed at 5 years old I have a sister with CF who passed away at age 12, she was 3 years older than me My mutations are R347P and 4005+2T>C My Fev1 is 51% I am a Registered Nurse and worked as an ICU nurse for many...
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    Adults with CF what are your jobs?

    I am a Registered Nurse and had to recently quit working due to my health. I am waiting for approval for SSDI.