sandra-moore
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I am 62 and was on Trikafta for 8 difficult months. I saw no improvement in my PFTs and I had many side effects and drug interactions. I had alot of anxiety, shortness of breath and increased headaches, among other things. I tried a lower dose, which improved my breathing and anxiety, but other problems persisted and as I wasn’t seeing any improvement in my PFTs there was no benefit in continuing. I’m very happy to be back on Kalydeco, which keeps me pretty well without unpleasant side effects. Trikafta was a big disappointment for me. It was so hyped up as being a wonder drug. But they didn’t mention the potential side effects. I think it could have been easier if I’d know more about what could happen and that it wasn’t just me that was having a hard time.
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For day to day inhalation treatments I have created a chart in a spreadsheet. I include a slot for exercise and key meds like my Kalydeco. For the meds that have to be taken at certain intervals I record the time. For everything else I just check it off. I also track my exercise. It’s a good visual of how my week is going and really simple. Sometimes I set alarms on my Fitbit for in my phone. But I don’t find that as helpful as my daily schedules vary.
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I have started to sterilize in my Instant Pot. It has a sterilizer feature. I have it set for 12 minutes. I wasn’t sure how long to set it for and wasn’t able to find any expert advise with recommendations. I am curious if anyone else is doing it this way and what timing they use.
I used to use a baby bottle sterilizer and I think the Instant Pot is better as you can set it for longer cycles.