Getting fat on Orkambi

[liveitup]

Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight! Right now it is a little funny that I am having this problem, but I may need to get myself on a diet soon!

 

[saintoffeon]

I lost my appetite at first, so I lost a lot of weight.

I'm -trying- to regain it.

Not to be gross, but I went from tons of greasy stool, like super common, to being perfectly regular every day just like normal human feces.

Now it's a little softer than usual but still no grease.

Thing is, I also never needed pancreatic enzyme supplements to live (they never worked well for me and in some cases hurt after taking them).

So I wonder if the same thing that makes me not need them plays into my ability to lose or not lose now that I'm on Orkambi.

If I may ask, what's your pancreatic situation?

 

[AH11201]

Actually, I did experience something similar. My CF problems are almost all digestive, but I've never had a problem gaining weight. When my digestion is off for whatever reason, I do notice I gain a few pounds, especially around my stomach. When everything is working smoothly and I'm eating really well, things normalize. On Orkambi I started having bad constipation, bloating, etc., and that caused me to gain weight. I got off it in early October and it's only in the last week or so that things have started to feel normal again.

 

[liveitup]

So, I am 36 years old. I had not been on digestive enzymes since I was about 16 years old. My cf dr. just prescribed enzymes recently - after I started Orkambi. I am wondering if it is because of the "must be taken with ...fat, etc." I've been taking the enzymes. I never had bowel issues... I am eating fat now to take the Orkambi. I was underweight before - yes! Honestly, I liked it that way. I am a woman, lol! I hope this answers questions? I also have 3 kids, a wonderful husband, 4 cats, a lizard, fish...the list goes on. I am undeniably blessed and very grateful. My CF has been (praise GOD!!!) very mild.

 

[welshwitch]

Dear liveitup: I'm always happy to see moms on this site, and also people whose CF has been very mild. I also think I fit into this "mild" category. I turn 36 next month, hooray! Always waiting for the other shoe to drop but I am trying not to let it take over. Have a wonderful day!

 

[occupyjapan]

I've always been heavy for a CF patient. Prior to starting Orkambi, I was on a diet and pretty strict exercise regimen. Simply by adding Orkambi to my regimen - even while continuing my diet and exercise - caused me to GAIN 20 lbs, whereas I'd been losing several pounds a week previously.