Anxiety on Trikafta

[DougB]

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 team that I work with at OHSU worked hard to get my insurance to cover the medication and I received my first dose on New Years Eve (a great way to say goodbye to 2020 and a refreshing start to 20212).
I am now in my 4th week of taking Trikafta and couldn't ask for anything better. Before starting the medication I was on a sharp decline with my CF complicated by culturing a multi-drug resistant strain of mycobacterium abscessus and Allergic bronchopulmonary Aspergillosis. My case is very complicated with conflicting treatment options. Since taking Trikafta my health has completely changed. I no longer have the "sick" feeling anymore, I can clear my airway with little effort, I can breathe deeply again, I have energy to spare, I can taste and smell again, my mouth is no longer dry, I am gaining weight and I just feel healthy again. I couldn't ask for a better reaction to this drug.
My issue is my mental health. I have been having so much anxiety about how I feel now. I guess I was getting comfortable and accepting my imminent death that I now feel lost. I also fear being taken off the medication for various reasons. I am reaching out to others to see if someone else has had comparable results and anxiety after taking this medication and how do you cope with this feeling. Please share your experiences with me. Thank you all for reading.

 

[kenna2]

Your anxiety is valid. I had to talk to my therapist about this. We have known and accepted one way of life for so long. Battling CF and all that comes with it, has put us in battle mode all our lives. We're on high alert all the time and always looking over our shoulders. No one really ever talks about what it's like when that battle mode ends or is reduced. It's amazing and scary at the same time. I've been on Trikafta for a little over a year and I'm still working on not looking over shoulder. This is a whole new normal that we're adjusting to. If you're not seeing a therapist, I'd highly suggest talking with one. Unfortunately, I can't remember the exact phrasing my therapist used to "flip the switch" in my brain for that to shut down. But just know many of us are feeling that way and your feelings are valid.

 

[DougB]

Your anxiety is valid. I had to talk to my therapist about this. We have known and accepted one way of life for so long. Battling CF and all that comes with it, has put us in battle mode all our lives. We're on high alert all the time and always looking over our shoulders. No one really ever talks about what it's like when that battle mode ends or is reduced. It's amazing and scary at the same time. I've been on Trikafta for a little over a year and I'm still working on not looking over shoulder. This is a whole new normal that we're adjusting to. If you're not seeing a therapist, I'd highly suggest talking with one. Unfortunately, I can't remember the exact phrasing my therapist used to "flip the switch" in my brain for that to shut down. But just know many of us are feeling that way and your feelings are valid.

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 medication. Your response is very much appreciated.

 

[brutuscz]

I like you found out in December I qualified for Trikafta!! I have 3 rare genes for Cf and have been told I’m the only one in the world with my genotypes.. for years I petitioned Vertex for help. I think I got lucky with them testing my genes because I constantly had myself and Cf team bombard th

 

[brutuscz]

Bombard them with requests! I started 3 days ago. My fev1 is 30 percent I’m 63 years old and survived Covid! After the first day my dark green oatmeal mucus is yellow and white! I was coughing over 100x day, did 3-5 hours vest a day plus everything else and now I feel amazing??? I can’t believe it how on a dime are lives can change?? I’ve gone through and played out my death a thousand times!! Everyone knew my last meal I wanted! Now maybe I get a chance! Don’t be nervous don’t be afraid we have had the chance to do a do-over. Too be reborn. Embrace it! I’m turning that guilt of why did I get the chance into helping others feel what I feel. I called Vertex and already told them they have to give every cystic this chance. Everyone deserves to feel like that monkey on their back is gone. We’re all sisters and brothers in this disease so take your anxiety and help another cystic. Your going to be great because you already were and now the possibilities are endless!!!

 

[Rudyrose]

I too am 61 and have odd mutations that were approved in December. Took my insurance a while to approve but my delivery is scheduled for Wednesday. Can't wait to get started and see some improvements.

 

[brutuscz]

Good luck you will do amazing!!!!

 

[DougB]

I too am 61 and have odd mutations that were approved in December. Took my insurance a while to approve but my delivery is scheduled for Wednesday. Can't wait to get started and see some improvements.

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.