My Child is Starting Orkambi 75-94mg/ Granules for CF. What can I expect for side effects?
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?
I work in the pharmacy, and I've seen a few parents come in worried about the side effects. The good news is that most kids tolerate Orkambi well. The bad news is that the granules can be a bit tricky to get down for some of the pickier eaters. I recommend trying different flavors or mixes to find something that works. And remember, if you notice anything alarming, get to the doctor right away. It's always better to be safe.
We've been on Orkambi for about 6 months now, and while there were some initial stomach issues, they've settled down a lot. The biggest challenge was getting my kid to take the granules consistently, but we've found mixing them with applesauce helps a lot. Keep an eye on liver function; that's what worried me the most at first, but regular check-ups have been good so far.
I'm really glad to see so much positive feedback. We're just starting, and I'm hoping Orkambi is just as effective for us. As for side effects, our doctor gave us a whole checklist to monitor stuff and call if we see anything. I think that's really helped keep our anxiety in check.
Side effects were milder than I expected, but the improvement in lung function was noticeable within a few weeks. It's been a game-changer for us.
Orkambi has been a bit of a mixed bag for us. The serious side effects luckily haven't been an issue, but the day-to-day stuff like upset stomachs and increased sputum production have been a bit rough. We've had to adjust his diet a lot, and it's been a learning curve. The key is to communicate with your doctor and be patient. Your kiddo might be one of the lucky ones who have minimal side effects, but it’s better to keep an eye on the liver and any of those signs that could indicate more serious issues.
Good luck! My little one had some coughing fits at first, but the doctor said it's normal. Just keep a close eye on anything unusual, and don't hesitate to call the doc!
I think Orkambi can help a lot, but always be on the lookout for those dangerous side effects. When in doubt, always call the doctor.
We were worried about the liver side effects, but regular check-ups have kept things under control. Fingers crossed!
Has anyone else had issues with the dosage? My kid's dosage seems to fluctuate a bit, and the doctor can't seem to figure it out.