New drug Trikafta

Posted by ritapearl @ritapearl, Nov 10, 2021

Has anybody been using Trikafta a drug for CF to help withMAC and Bronchiectasis

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I haven't heard of it being tried, but there may be someone out there who knows.
Keep in mind Trikafta (elexacaftor + tezacaftor + ivacaftor) is a gene modifier, targeted to a specific genetic mutations in CF patients. CF is not generally present in Bronchiectasis, although some people here have some CF genetic markers.
It is not an antibiotic, so it will not cure infection. It is not a mucolytic, so it will not thin secretions on its own absent CF gene mutations.
The best place to find out about any trials would be to contact the manufacturer.
Sue

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Thank you Sue,I have had a terrible reaction to the big three regimen after 2 weeks(extreme tiredness,nausea,no appetite,weakness.My pulmonologist said take a break.I also had bleeding at the same time.Not sure where I’m going.

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@ritapearl

Thank you Sue,I have had a terrible reaction to the big three regimen after 2 weeks(extreme tiredness,nausea,no appetite,weakness.My pulmonologist said take a break.I also had bleeding at the same time.Not sure where I’m going.

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Well, back in 2018, I had a similar reaction (except the bleeding.) My doc wasn't too helpful, but his very experienced nurse was a gem. Here is what she had me do:
Star the medications, one at a time, at bedtime with a little food. Take for a week, if no severe reaction, start the next for a week, then the third. By taking with a bit of food at bedtime, I was asleep for the worst of the nausea. I also started a daily probiotic.

At the suggestion of other people, who had been through the antibiotics or chemo, I started eating tiny amounts of food every hour - maybe 1/2 an energy drink, 4-6 oz of a smoothy, 1 oz of cheese, 4 oz yogurt, a few cashews, 1/2 an apple... Also, I discovered many years ago that something about an apple or applesauce (but not apple juice) tends to settle the stomach.

Neither of these were a "magic bullet" - I still felt lousy, but was able to stay on the meds long enough to get rid of the cavities in my lungs. Now, almost 2 years later, I maintain with daily saline nebs and airway clearance.
Good luck, and let me know what your doc has you do.
Sue

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@sueinmn

I haven't heard of it being tried, but there may be someone out there who knows.
Keep in mind Trikafta (elexacaftor + tezacaftor + ivacaftor) is a gene modifier, targeted to a specific genetic mutations in CF patients. CF is not generally present in Bronchiectasis, although some people here have some CF genetic markers.
It is not an antibiotic, so it will not cure infection. It is not a mucolytic, so it will not thin secretions on its own absent CF gene mutations.
The best place to find out about any trials would be to contact the manufacturer.
Sue

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@suemn alot of us with Bronch and MAC have 1 CF gene, so maby.. Heather

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@heathert

@suemn alot of us with Bronch and MAC have 1 CF gene, so maby.. Heather

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Hi Heather - Like I suggested, maybe a direct contact with the developer would be a way to learn if a trial is possible. You can look at the site - at least one of the required mutations is named.
Sue

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@sueinmn

Hi Heather - Like I suggested, maybe a direct contact with the developer would be a way to learn if a trial is possible. You can look at the site - at least one of the required mutations is named.
Sue

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I am being enrolled on a clinical trial for Trikafta in the next month at Emory U in Atlanta. I have the one required mutation and medium sweat chloride along with bronchiectasisand history of MAC and other lung infections. My regular pulmonologist referred me to the CF pulmonologist who prescribed it for me after I explained that my niece has benefitted greatly due she has two CF genes instead of 1, and was born with CF. My insurance denied it twice. Will see whether the 30 days on Trikfafta helps. If not there is new drug coming out next year not approved yet by the FDA bransatocib? cannot remember the exact spelling.

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I am on trikafta. I had the one gene mutation and an extremely high sweat test. There was no problem with insurance. I still have MAC and I am on the big 2. Rifampin and I are not friends. I'm actually having a CT scan today This is my 1st one since starting trikafta. My CF team is hopeful that I will see a big improvement since being on trikafta. Have you been referred to an adult CF clinic?

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