Pancreatic Issues and Orkambi

[brad.johns]

So I am having stomach issues since I started taking Orkambi. It seems that when I increase my dosage of zenpep these issues subside on their own. Yesterday, I asked my doctor if I could up my dosage of zenpep, currently 13 per meal, by 1 or 2 pills and was told that I could not. His response was that I would go over the maximum amount of Lipase per day and would scar my colon. However, I have done some research on my own today and have found that the dosing info says 2,500 units of lipase per kg per meal OR 10,000 units of lipase per kg per day. If I use the daily calculation I still have another 11 pills I could actually take each day. My question would be does anyone else use the 10,000 units a day as the dosing max or is it standard to use the 2,500 units per kg per meal max as a guide?

 

[Ratatosk]

I have friends whose kids are limited to x number of enzymes per day despite what they eat. We've always just based ds' enzymes based on input and output. If he eats something much higher in fat, such as pizza or theatre popcorn, we've been told by his doctor to increase # of enzymes. As for the scarring of the colon, we asked when ds was a baby because a lot of times we'd give him enzymes and he'd hardly drink his formula and we worried about that. His doctor indicated that the product warnings referred to massive amounts of enzymes over time. IMO, and based on your research, I'd see if taking an extra enzyme would help.

On a side note, DS initially had stomach issues -- very loose stools that didn't resemble malabsorption and we figured it was the orkambi getting all that extra mucus and crud out of his intestinal tract. After a couple weeks he was back to normal without adjusting enzymes

 

[kittencaitlin]

brad.johns - i can probably help as I had an issue with my zenpep and dosing and did a ton of research and asked a million questions and as best I could got to the bottom of it! but first of all - which zenpep are you on? what color are they

(i'm on the blue - 25,000) not sure what other ones they offer here in U.S.

 

[Printer]

Brad:

There are very few CF/GI Doctors, anywhere in the US. I would suggest that you Google Steven D. Freedman, MD, PhD. He is located in Boston

Bill

 

[brad.johns]

brad.johns - i can probably help as I had an issue with my zenpep and dosing and did a ton of research and asked a million questions and as best I could got to the bottom of it! but first of all - which zenpep are you on? what color are they

(i'm on the blue - 25,000) not sure what other ones they offer here in U.S.

I am on 15,000 and they are pink.

 

[carisabo]

i also had issues after a few weeks on orkambi. it seemed like i wasn't taking enough "eating pills" as i refer to them as, or almost like i missed a dose, (which i never do) so i increased mine to 7 with meals instead of six. Mine are the zen-pep 25000. my doc also did not want to increase but suggested i take two prilosec's instead of my usual one. That didnt seem to help so i just stuck with what i know and i know that increasing my enzymes helped my stomach from hurting and crapping up a storm ( cf'ers know what im talking about) They did a study back in the 80's that suggested that long term high dose of enzymes might have contributed to scaring of the pancreas liner and some people had to have part of their pancreas removed. They could not point the finger at high doses of enzymes so they just played it safe and set a standard limit for docs to follow, which is well bellow what those people were taking. Just my two cents