Trikafta Side Effects - My Story

[@Nickstanator]

Good to finally hear your thoughts

[@zacharysbrennan5376]

Hi 50 year old w/ CF. Not diagnosed until 37. On Trikafta for 1.5 years. The side effects are horrible for me. It keeps my lungs more clear but I still need the albuterol or bronchodilators. I feel like I’m in a haze daily, dizzy, headaxhes. My eyes burn and water daily, and I get styes in my eyes. I’ve gained why too much weight. And I have a weird fluttering feeling in my Adam’s apple. I’m also experience some sort of chest pain and palpitations frequently. Elevated bilirubin. Woke up almost every night at 4 or 5pm. Better if you take with 15g of fat. Don’t really cough though. But I don’t feel like my self anymore. Debating to stop and just stick with the daily breathing treatments.

[@BeLykeWatersofNunLoveLepus]

Avoid it at all cost. You shouldn't feel like that after a month of use.. go buy a chlorite inclusion quartz crystal. I have CF also and we have a messed up chloride channel which causes our mucus to be super thick cuz it can't break down certain foods and liquid. Hold the crystal on your right hand at all times and place it on the chest areas, under thighs, head areas you feel congested, only hold one quartz at a time and each area take deep n slow belly breaths. You will feel an expansion in your ears and eventually your nose and throat. It'll help you cough up mucus also. Many blessings and I hope you feel better soon

[@TreasureBooks]

Hey Troy! Nice to see you on here :) Looking forward to more videos :)

[@MattLavars]

Super useful video my brother and well done!

[@jordanrobbins306]

I had some of those symptoms, I also had vertigo symptoms and a full body rash. Luckily it all has subsided except the migraines . Definitely looking forward to more of your videos

[@troymendous]

Jordan thanks so much for your comment, always refreshing to know we're not alone when it comes to side effects. Some of us really do draw the short straw. More CF focused videos coming out very soon, so would LOVE for you to subscribe to the channel. Love your support thanks heaps bud!

[@Ryan-ih4ii]

My son will be 6 yo in August and therefore eligible to start on Trikafta, I appreciate you sharing your experience as it will give us things to watch for since he is not yet able to recognize and correlate changes like this for himself. Thank you!

[@troymendous]

Thank you so much for your comment Ryan, any questions don't hesitate to reach out to me on instagram @troymendous and happy to help with anything if I can. I have a lot more content coming out soon around CF so would love it if you could subscribe to my channel, thanks heaps.

[@Ryan-ih4ii]

@@troymendous subscribed and followed on ig - thanks again!

[@kimmystummytreats]

Omg Troy I love your Kitty, so definitely more videos featuring Casanova.

[@iamchloehearmeroar]

Love you!

[@7thCruisader]

I’m 23, and 5 months into trikafta and it makes me physically in wonderful shape, but my mind is the most anxious it’s ever been. Also going from being a great sleeper to being an insomnia who needs Xanax to sleep. Also have pancreas pain occasionally. My question to you is - how is life off of trikafta now compared to when you were on it? Did you ever find a trikafta regime that worked? (Assuming you didn’t) thanks for making this video bro

[@troymendous]

Thanks bro! Only just seeing this now. To be honest, I'm still figuring out my self-medicating regime. I'm testing out 1 tablet every-time I feel a little chesty and/or feel like I need to do air-way clearance. Which is roughly every 2 weeks or after having a cold. On those days, I also take Urso. I haven't figured out what works, for me, and also what works for me likely wouldn't work for anyone else, but happy to always share what I'm doing in this self experiment / n of one trial through my Cystic Fibrosis journey. Subscribe to my channel to hear how full-time travel is also impacting my regime, videos being uploaded this week.

[@scalareale9024]

Does urso just make something against bilirubine or even on other liver enzymes as AST, ALT…?

[@troymendous]

(From what I've been told by my clinic) is that it primarily brings down bilirubin, and does also reduce other liver enzymes through a mechanism they are yet to understand.

[@missyd9553]

Are you on Trikafta now? Nov2022?

[@troymendous]

Hey Missy! Thanks for your comment! At this point in time I am not, but every now and then I do feel the CF creeping back and am feeling like I slowly need to reintroduce airway clearance, however clinic is coming up and I’ll see if I can go on a modified dose.

[@missyd9553]

@@troymendous I have been off a week and slowly getting back to the thicker mucus. Trikafta is a love - hate relationship!! Body feels better. Just wish the lungs would stay better! Ha

[@zacharysbrennan5376]

Modified dose doesn’t work, at least for me. Full dose to reduce mucus.

[@missyd9553]

@@zacharysbrennan5376 have you heard of indrepta B or C?

[@troymendous]

Back on modified dose. Playing with dosage currently will Vlog about it soon!

[@michelkroll6741]

More Cat videos please.