ResearchCon 2022 | Trikafta Experiences: Keeping it real-(world)

The approval of Trikafta, a CFTR modulator, was a breakthrough in cystic fibrosis treatment, providing amazing benefits for many people with CF. At the same time, we know that each person’s journey with this treatment is unique, and there is no universal Trikafta experience.
During this session, clinicians and adults with CF will present an honest discussion of what we know about Trikafta and where future research is heading. You’ll hear personal stories that highlight both the good and the challenging; including how hard it can be to determine whether a new symptom is being caused by a drug.
Originally recorded April 9, 2022.
0:00:00 | Trikafta Experiences: Keeping it real-(world)
0:02:58 | Meet Tré LaRosa, an adult with cystic fibrosis who takes Trikafta
0:05:35 | Meet Erin Kunzen, an adult with cystic fibrosis who experienced adverse events while taking Trikafta
0:07:45 | Poll questions - audience demographics
0:13:20 | Trikafta and studies of real-world experience
0:25:37 | What does the future hold for those taking Trikafta?
0:32:28 | Erin’s CF story
0:37:33 | How does Trikafta work? What are the common adverse events?
0:45:12 | Erin’s challenges with Trikafta
1:01:50 | How can you report adverse events on Trikafta?
1:04:57 | Does Trikafta affect the occurrence of kidney stones or eye issues?
1:07:20 | Is there any research looking into Trikafta and mental/neurological effects?
1:11:57 | Closing

[@tettyfelarious2304]

It’s more than a handful of people reporting fogginess! Thank you for addressing this though, it needs more investigation. I think it could also maybe be down to sleep cycles being affected. I wake up loads in the night since being on it

[@zacharysbrennan5376]

49 y.o.
Diagnosed at 37 - when symptoms started
Take breathing treatments albuterol 2x day, pulmozyme 1x
After 3 previous attempts taking Trikafta (6 weeks full dose)
Adverse effects negatively affected me causing me to stop, biggest being chest discomfort/uneasiness, lesser headaches, dizzy, burning dry or watery eyes.
Never had the “purge” effect people describe.
Tried full doses a few times prior, 3 months longest before stopping due to elevated liver enzyme results and intense side effects.
Then took half dose for 6 months with few negative side effects but not very effective.
My CF has effected my lungs more than other parts of my body at this time.
And Trikafta effects my liver enzymes
- my current adverse effects not mentioned in video deal with chest/lung is a weird uneasy chest feeling, and feeling not getting enough oxygen with regular breathing . If that feeling would go away then I could manage the result and feel a better quality of life
I wish there was a easier way to connect with adults w/ CF because your mind/depression gets worse.

[@zacharysbrennan5376]

In the Q/A portion of video: adverse eye effects, mental fogginess, was brought up by online viewers. Frustrating how the doctors reported minority reports of these side effects. And those side affects also negatively effect me.
And they only had 1 question. That’s really poor for viewers who seek value from these videos.