I have a few questions about Kalydeco. My mutation is 3272-26A->G, and I just started taking it five days ago. I know everyone is different, but wondering how long before you noticed a difference? Also what times do you take it and with what foods? I’m currently taking it with breakfast at 9:00am and then with a fatty snack at 9:00pm. It’s hard to eat to much at night, so looking for ideas for a fatty snack. So far I’ve had avocados and hard boiled eggs. Any information on Kalydeco would be appreciated. Thanks
Cystic Fibrosis Forum (EXP)
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New to Kalydeco
- Thread starter Babs03
- Start date
6 months on Kalydeco
Hi,
I started 6 months ago and noticed really thin sputum right away! Within a few days! I take mine at 7:45 a.m with breakfast, and 7:45 p.m. with a snack unless I had dinner late, then I don't eat anything else. I've started adding MCT coconut oil to my morning coffee. It's tasteless, but high fat, so I don't always eat anything with it. I have gained about 8 lbs, which my Dr says it about average. I try not to eat too much with it at night. Nuts or a little peanut butter usually. I don't really have a need to gain any more weight
Good Luck!
Hi,
I started 6 months ago and noticed really thin sputum right away! Within a few days! I take mine at 7:45 a.m with breakfast, and 7:45 p.m. with a snack unless I had dinner late, then I don't eat anything else. I've started adding MCT coconut oil to my morning coffee. It's tasteless, but high fat, so I don't always eat anything with it. I have gained about 8 lbs, which my Dr says it about average. I try not to eat too much with it at night. Nuts or a little peanut butter usually. I don't really have a need to gain any more weight
Good Luck!DS is on Orkambi and during the week he usually takes it around 7:15 with breakfast -- lately he's been eating a gogurt, uncrustable (PB & jelly sandwich) and drinks carnation instant breakfast or whole milk. Then he take his 2nd one around 6:30 with supper. If he sleeps in he usually has it with breakfast/lunch and then around 9:30-10 he has a snack or at the very least takes it with a glass of whole milk.
His snacks include buttered popcorn, peanuts, almonds, trail mix, aged cheddar, jerky, kashi nutbutter bars, Cheetos, handful of tortilla chips and whole milk. I have gotten him smaller whole milk yogurts at trader joes, ice cream -- something that is high in fat and calories, but slips thru the cracks if he's not all that hungry. Not sure if you're a meat eater..., but last summer my father in law purchased a huge bag of sliced pepperoni -- DS had been eating grilled cheese with pepperoni and I had no idea what to do with such a large bag. A friend suggested baking them into chips. She spreads them on a baking pan and bakes them at 400 F for about 6-7 minutes until they get crispy.
His snacks include buttered popcorn, peanuts, almonds, trail mix, aged cheddar, jerky, kashi nutbutter bars, Cheetos, handful of tortilla chips and whole milk. I have gotten him smaller whole milk yogurts at trader joes, ice cream -- something that is high in fat and calories, but slips thru the cracks if he's not all that hungry. Not sure if you're a meat eater..., but last summer my father in law purchased a huge bag of sliced pepperoni -- DS had been eating grilled cheese with pepperoni and I had no idea what to do with such a large bag. A friend suggested baking them into chips. She spreads them on a baking pan and bakes them at 400 F for about 6-7 minutes until they get crispy.