Discussions tagged “Orkambi”

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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?

cyticfibrosis
Orkambi
CFmedication
martha_fox · 2d ago
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73

My experience with Orkambi 100-125 Tablets - CF treatment journey

Hi everyone, I've been taking Orkambi 100-125 Tablets for the past six months, and I wanted to share my experience. Orkambi has been a game-changer for me as someone with cystic fibrosis and the F508del mutation. I've noticed a significant improvement in my lung function and overall energy levels. However, I’ve also experienced some side effects like stomach pain and diarrhea, which have been manageable. I wanted to hear from others who have been on Orkambi and their experiences, especially regarding the side effects and any tips on managing them better. Also, for those who have switched from other medications, how does Orkambi compare? Any insights would be greatly appreciated!

CysticFibrosis
Orkambi
Medication
aaron_nelson · 3d ago
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45

Orkambi 150-188mg Granules: Life-Changing for CF Patients with F508del Mutation

Orkambi, a medication specifically designed for cystic fibrosis (CF) patients with the F508del genetic mutation, has been a game-changer for many. Containing two powerful drugs—lumacaftor and ivacaftor—Orkambi works by correcting the faulty protein in CF patients' cells. Lumacaftor helps the protein get to the right place, while ivacaftor improves its function. This combination significantly enhances lung function and overall health. However, like any medication, Orkambi comes with its share of side effects, some of which can be serious. It's crucial for patients to be aware of these potential issues and to consult their doctors if they experience any concerning symptoms. This thread is for CF patients, caregivers, and healthcare professionals to share their experiences and insights about Orkambi 150-188mg Granules.

CysticFibrosis
Orkambi
MedicationSideEffects
christopher_turner · 3d ago
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41

Orkambi 200-125mg Tablets: A Game-Changer for Cystic Fibrosis Treatment? Let's Discuss!

Orkambi has been a groundbreaking medication for those with cystic fibrosis (CF) who have the F508del mutation. It's designed to help the faulty protein in CF cells function better, which can significantly improve lung function and reduce other symptoms. However, like any medication, it comes with a range of side effects, some of which can be serious. I've been reading about the potential benefits and risks, and I'm curious to hear from others who have experience with Orkambi. What's been your journey with this medication? Have you noticed any significant improvements in your condition or have you encountered any troubling side effects?

cysticfibrosis
Orkambi
medication
martha_nichols · 3d ago
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