• One year later :)

    Posted by raphael on February 5, 2021 at 5:56 am

    Hello

    I am 45 years old, I live in France and I have 2 young children (3.5 and 6 years old). I have been taking trikafta for a year now. it’s very good, i can play sports with much less difficulty now and i can play with my children easily too šŸ™‚ which is great.
    my vems before was 1.10 L (32%) and vital capacity 2.10 (50%)
    now vems is 1.5 (45%) and vital capacity 3.2 (80%)
    I had oxygen at night and I no longer need it, the saturation is very good.
    I only have 2 significant side effects: hypertension (I am taking a treatment) but I already had a little before, and a little difficult digestion (bloating in the evening: s) ..

    Do you have this kind of side effect?

    About Creon, are you taking the same dosage as before or has it changed?
    in France there is little hindsight with this treatment.

    And then do you take the treatment every day or not? have you tried taking just one yellow pill? when i don’t take the blue pill i don’t feel a difference, i wonder if the 2 yellow pills are necessary or if we can try to take only one in two.

    Regards, have a nice day.

    Raphael.

    paul-met-debbie replied 3 years, 2 months ago 3 Members · 2 Replies
  • 2 Replies
  • jenny-livingston

    Member
    February 5, 2021 at 9:43 am

    RaphaĆ«l, Happy One Year! I am so glad to hear that you’re doing well on Trikafta! I’ve also been taking it just over a year. I, too, have experienced some incredible benefits. Being able to play and do more with my daughter is one of the very best things about Trikafta in my opinion!

    Initially, I did experience some bloating and extreme stomach discomfort. Over a few months time, I slowly adjusted my dosage of Creon until I found what works best for me now. I was able taper down from 5 Creon with meals to just 2-3. Now, my digestion is more regular and comfortable than I ever remember it being.

    I have some friends who have altered their Trikafta dosing schedule (with the approval and direction of their doctor). Some take alternating pills every other day — yellow/orange pills one day, followed by the blue pill the next day. Others have switched the morning and evening doses to help alleviate some symptoms. Personally, I take all 3 pills as prescribed each day and it has worked well for me.

    As you said, there isn’t much research or hindsight yet. We still have so much to learn about this medication, and it makes sense that each of us will react a bit differently to it.

    Thank you so much for sharing this with us! Wishing you another wonderful year and many more!

  • paul-met-debbie

    Member
    February 6, 2021 at 12:59 pm

    Thanks Raphaƫl for sharing your experiences with Trikafta!
    I have yet to start with it, perhaps later this year, so it’s good to hear some feedback from those already on the drug, espicially because we have comparable lungfunctions.
    I have always been quite inventive in finetuning the dose of medication to my own needs, so I can understand your thinking very well.
    Hope you find your optimal dose soon so that you can minimalize the side effects.

    Cheers,
    Paul

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