Discussions tagged “CFmedication”

My 3-year-old has just started Orkambi Granules to improve her lung function and overall health, since she has two copies of the F508del mutation. We are hoping this medication will be as helpful as the testimonials we read before starting the treatment. To be honest, I'm a little worried about the possible side effects, especially the severe ones. I've read the pamphlet, but I'd love to hear from others who have experience with this medication. How common are the serious side effects? What can we expect in the first few weeks? Any tips for managing the more common side effects like stomach pain or diarrhea?