Pancreatic Sufficient and Kalydeco

[fel]

Hello,

Well by some miracle (namely our saintly CF doc) my older son got Kalydeco off label despite only having one known CFTR mutation. He starts tomorrow. I was wondering if anyone else like him (Pancreatic Sufficient) has taken Kalydeco? If so, have you found that eating certain foods with it make it more effective? My son does not have a problem keeping on weight (he is on the chubby side) but he does have intestinal issues when he has a high carb, low fiber diet. He has been doing well with a low Glycemic Index diet when he complies with it (when he doesn't he is on the toilet a lot). But I was wondering what kind of diet he should have for the Kalydeco. Should he make sure he takes it with food, and specifically with fat?

I don't think our center has had anyone who is PS take Kalydeco before.

Also any tips on things to do when starting it would be so helpful. It is finals week at his college, so not the best time to start. However, I don't think we can bear to wait. He has been sick and depressed for a long time now.

Thanks!!!

Fel

 

[Aboveallislove]

I'm pretty sure take with fat is unrelated to ps...kalydeco I think is fat soluable so it needs fat to work well....so I'd follow directions on that regardless of ps. Good luck!

 

[jricci]

Hello,

Well by some miracle (namely our saintly CF doc) my older son got Kalydeco off label despite only having one known CFTR mutation. He starts tomorrow. I was wondering if anyone else like him (Pancreatic Sufficient) has taken Kalydeco? If so, have you found that eating certain foods with it make it more effective? My son does not have a problem keeping on weight (he is on the chubby side) but he does have intestinal issues when he has a high carb, low fiber diet. He has been doing well with a low Glycemic Index diet when he complies with it (when he doesn't he is on the toilet a lot). But I was wondering what kind of diet he should have for the Kalydeco. Should he make sure he takes it with food, and specifically with fat?

I don't think our center has had anyone who is PS take Kalydeco before.

Also any tips on things to do when starting it would be so helpful. It is finals week at his college, so not the best time to start. However, I don't think we can bear to wait. He has been sick and depressed for a long time now.

Thanks!!!

Fel

I’m on Kalydeco and I’m pancreatic sufficient. Yes, you definitely need to take it with fat. It has been shown to increase effectiveness when taken with fat. I usually take with milk and peanut butter. No specific # of grams of fat were ever recommended to me, but I usually shoot for about 10 grams.

Good luck to you. I remember how exciting (yet terrifying) that first dose was. I was so hopeful but at the same time so scared that it wouldn’t work. I hope Kalydeco works its magic for your son like it did for me. Please keep us updated.

 

[Deb]

I am pancreatic sufficient and have been on Kalydeco for over 2 years now. Yes, you need to always take the medicine with fatty foods but other than that you do not need to alter your diet. Like someone said above I usually take my morning dose with a spoonful of peanut butter. Even without changing diet habits, this drug causes weight gain. I gained 15 pounds. I believe the average gain when I was doing the study was 12 pounds. I find this frustrating as I have never had trouble gaining weight and was actually trying to lose weight when I started the trial. I am still struggling to take off weight.

 

[fel]

Yes I hear you Deb-- my son is trying to lose weight too. He has very poor eating habits (pizza is his favorite food).
Do you remember starting Kalydeco? How did affect you in the beginning? I am wondering what to expect if it is working. He only has it for a trial period (perhaps 2 months, although this is unclear).

 

[alikat0079]

Hey, i am ps and started kalydeco off label in October. It has been awesome so far. I take it with milk or string cheese usually. Again aiming for 10g of fat. I too have noticed some weight gain. When i first started taking it my lungs felt kind of wet for the first 3 days. I coughed up a lot of old, nasty sputum. After the first few days i pretty much stopped coughing all together. I am getting a bit more energy and am noticing i have more stamina when i exercise. I have had no negative side effects wroth the med. My fev1 went up about 10% so far. I can't wait to see how i do as i continue on this med. Good luck to your son, it is very exciting to be on kalydeco.

 

[sdeuber]

I am on Kalydeco and I am pancreatic sufficient - gained some wait since (as the doc predicted) - only half the dosage.
Please monitor your son's liver - AST and ALT - mine went thru the roof, I had to stop K and then went on a half dosage (1 pill per day) - still same effect!
S

 

[Deb]

I don't remember any drastic changes when starting the drug. I had stared working out in a gym 5 days a week prior to starting Kalydeco. My PFT's jumped considerably due to working out but then increased even more on the drug. Note: I only have one lung so I am limited in the amount of increase I can achieve.
Just as an FYI: I just had a visit today and after 3 1/2 months of not working out due to my gym closing, my PFT's have dropped quite a bit even though I am on Kalydeco. Needless to say I will be finding a new gym very soon. A lot of people are afraid to work out and truly exert themselves but this is by far the best thing we can do (in my opinion and also based on what I am currently seeing)