Enzyme Issue

littledebbie

New member
Enzyme Issue

So I searched the word enzyme and read some old threads but I didn't see an answer to my problem so here it is....
I take Ultrase MT 20 and for some time I have thought it's been losing it's effectiveness. My Dr. says we could try a different Ultrase but I would like to try a different enzyme all together, does anyone have a suggestion that's not an Ultrase product? And how many does everyone else take I take like 8 and that usually makes my dietician look like she's going to wring my neck, but when 4-6 is not working my at home solution is like duct tape...let's try more!
 

Faust

New member
RE: Enzyme Issue

I take 10 for normal meals, 11 if it's a real greasy/fatty meal like BBQ or something. Has worked for me for a long time now, and i'm on MT 20's also. Try upping the doseage a bit. I don't think you have much to worry about if you up the doseage but stay around 10. CF kids were having problems with their rectums flying out with higher doses of enzymes though, but i think you would have to take fairly large amounts to have that happen.


As for "other enzymes", pharmaceuticals aside, I do believe there are several different enzyme supplements and pro biotic bacteria supplements. Pro biotic supplements should be a main part of any CF's supplement regimen anyways due to them nuking their systems with antibiotics all the time. Up the doseage slight and if that doesn't solve your problem, look into probiotic bacteria supplements to make your internal flora healthy, and then possibly look into supplemental enzymes as well.
 

anonymous

New member
RE: Enzyme Issue

Hi Debbie,
I now take Ultrase MT20 too. I know I used to take Pancreas MT -- fill in whatever number it varied as I grew. I don't know if they still make them, but I do know there is another type of enzyme because I have a friend taking something different than me. I also want to say that the enzyme my friend takes is a Pancreas something or other. I think the capsule itself is red.

I will say I don't know how, but a few years ago I had a dietician in my peds office sit with me and calculate what I ate on the norm (fat content and all) and somehow for my size and all she was able to calculate how many enzymes were enough and how many would be too many for me to take. I think she said something along the lines of there being a possibility of developing colon problems if you are taking more than you need over a prolonged period, I do not know if that is for a normal CF patient or a normal non CF patient - I assumed at the time she meant CFers , but since she was not with my CF office just someone from the same building "making rounds" its possible it as for the average patient. She ended up cutting back my dosing from 6-7 per meal to 3-4 with meals and snacks and I haven't had a problem.

I know that was a bit vague with the pill description, but for the life of me I can't think of the name for it. I hope that I was helpful somehow, but am thinking my info will probably not be too effective.

Have a Good Day,
Lindsey
23 w/CF and CFRD
 

anonymous

New member
RE: Enzyme Issue

Hey there,
I take like 10-12 mt 20's as well. I used to take creon, but I don't think they were that effective. I think uh, pancrease was what i used in the past (ECS 20's, if that rings a bell) and they worked wonders. I don't think my hospital carries them here in Ontario.

High amounts of enzymes have been known to cause colon problems, but don't worry about that. I think it had to do with older enzymes. I don't think anyone has had a problem for a long time, and never in Canada. I know someone that take 25 ultrase 20 wihth meals, and he doesn't have a problem.

If it doesn't work, it doesn't work. What can you do right? You know, one thing you might wanna try? Stop taking dairy products for a while. I always had stomach issues, had no idea what was the problem. Stopped taking dairy, and the difference was amazing. No more cramps, bloating lol....took me 22 years to figure that out.

I was reading cff.org that they are developing new enzymes, theraCLEC or something like that.....and they won't be from porcine origin. SUpposed to eliminated the need for massive amounts of enzymes, and they're much more stable too. Pretty exciting.....

And apparently they have inhalable insulin now as well....it's a good time to have cf! hehhe

Kiel
 

JazzysMom

New member
RE: Enzyme Issue

When I was dx at age 7 which was 30 years ago I was put on Viokase. I took them for years, but they were pretty nasty since there was no outside coating so if you didnt get them down right away U wanted to gag. Although we had a cat that loved to eat them. Whenever he smelled them (usually in my hand or on the table waiting for me) he would come running...GROSS!. For years (mainly teen thru twenties) I didnt take them. I did this on my own & since I didnt have belly aches I didnt see a problem. My weight was pretty stable so no major problems. During a hospital stay they did a stool sample & although I was maintaining ok I was loosing a lot of fat thru the stools so I started with enzymes again. This time on Pancrease. Took them for years with great results. I switched to Ultrase MT12 about 7 years ago for financial reasons. I needed the free ADEK & schadishakes offered by the manufacturers when showing proof of filling the med. I cant complain about belly aches etc, but I think my weight was better on the Pancrease. I currently take 5-6 with meals & 2-4 with snacks depending on the fat content. This has been adjusted over time & my needs. At one time I was taking 8 with meals. I know a lot of people that change enzymes brands & see a difference. I dont know why there is such a difference, but at times I guess its necessary. Changing the dose sometimes works, but not always. I cant imagine taking 10 or more enzymes. Just the storage of the meds until use would be a lot....good luck!
 

anonymous

New member
RE: Enzyme Issue

I took Ultrase MT20's for years (7-8 with meals, 3-4 with snacks) and they worked well for a long time, but recently I had noticed that I was getting horrible stomach aches and really greasy stools. It was as if the enzymes had stopped working. So I mentioned it to my docs and they switched me to an enzyme called Pancreacarb. Since then, I only have to take 4-5 with meals and 2-3 with snacks. I've also noticed that my stools are better (and don't smell as bad as they used to!!!) I rarely get stomach aches anymore and don't get gas very often either. I've only been on the Pancreacarb for about a month, but so far, I love them!

My doc explained to me how they are different from Pancrease/Ultrase (which are basically the same thing, made by different companies). I'm sorry that I don't remember the whole explaination, but it's something about the Pancreacarb containing a carbon protein or something like that. There's something extra in it to help break down food. You may want to give them a try.

-Aimee/23/ CF
 

anonymous

New member
RE: Enzyme Issue

I'm in Canada, so I'm currently taking Creon 20's (formerly they were called Cotazyme). I take 4 for large greasy meals, 1-2 for everything else. They're good.
 

anonymous

New member
RE: Enzyme Issue

you all have me thinking now. I have been on Ultrase MT20 since 1991. I take 5-6 depending on meals. My thoughts are I remebered something in the news and a doctor (not CF involved) say the manufacturers of enzymes were not regulated closely enough. Which might be a reason the enzymes are not always functioning properly. Has anyone else heard of this or am I loosing my mind??!! The US gov. was supposed to pass something for the FDA to follow.




Travis
39/wCF
 

Mockingbird

New member
RE: Enzyme Issue

Here is a link for an article on that. <a target=new class=ftalternatingbarlinklarge href="http://www.usatoday.com/news/health/2004-04-27-enzymes_x.htm">http://www.usatoday.com/news/health/2004-04-27-enzymes_x.htm</a>

I think the products the FDA is really trying to crack down on is generic enzymes, which we're all advised to avoid, anyway.
 
6

65rosessamurai

Guest
RE: Enzyme Issue

Actually, Debbie,

If you were to search the forum under "Ultrase", you'd most likely find an entry I put in for the explanations of the active ingredients, under the title "Side effects of skipping Ultrease" in the Adult folder.

Seemingly, everyone's pancrease acts different, some are in heavy need, some are in light need, and some just have to adjust their dosage based on what the next menu consists of.

I was on Cotazym S (which I don't think they sell, anymore), years ago, and had to take 15 capsuls (which in public places, some thought I was an addict--But I would sometimes reply with "an addict wouldn't be gulping 15 down at per meal every day!)

I would frequently get the 20 question bit from my doctor about my digestive activity, and the doctor would adjust accordingly. Depending on what foods you eat most often, the active ingredients for digesting animal fat may have to be increased. I've concluded that the animal fat breakdown in the digestive system is the hardest to do.

Though,?the enzyme warning indicates not to eat pork products with the enzymes because the contradict each other, it seems most people don't follow that warning. I had, for a long time avoided pork products while in the states, and of course, the first question they would ask is if I were Jewish.

Since I've been in Japan, it has been harder to avoid pork, and many cases I've had little adverse reactions, because I didn't have those enzymes anymore. But, now, lately my occasional intake of pork has gotten some adverse reactions (stomach aches), so I may have to resort back to the "no pork" rule, again.

Anyway, if you look up under "Ultrease", you may find a few hits, even try under a few other enzyme names, like "Creon"

To Travis,
My source indicated that any medication with prescription is one that has been passed by the FDA. Medications passed by the FDA are to contain a small margin of deviation. So, medications not passed by FDA, and are without prescription would have a high deviation to the contents (active ingredients) that are listed on the bottle.
Apparently, the companies didn't have to follow such criteron for such strict regulations in the beginning. I even recall there was another post relating to a recall of an enzyme company that let the medication get spoiled. Any enzymes that have changed in color due to moisture or going beyond its shelf expiration will either drop in effectiveness, or have an adverse condition to the patient taking it.
Unfortunately, according to the article (Thanks, Mockinbird for the link!), it'll take 4 years to clear the issue up!! To bad the only FDA approved is no longer available!
 

Faust

New member
RE: Enzyme Issue

Everytime I see Littedebbie's name I get the munchies and start jonesin for starcrunch cakes.
 

JazzysMom

New member
RE: Enzyme Issue

I dont like the LittleDebbie munchies (too sweet), but I also think of them each time I see her Screenname. Of course from previous posts Sean, it would be a surprise if during late night u didnt have your cravings!
 

anonymous

New member
RE: Enzyme Issue

Hey,
Just wondering...i'm on Pancrease Mt'16. i've been on them since I was 10. So I don't really know any other. i do think, if it's not broke don't fix it, but i was wondering if any of you have been on Pancrease and then switched for some reason. i just think i should be digesting a little better than i am. i have no problem with weight, but i'm so bloated (big round belly) all the time, and have frequent gas. (sorry y'all)
Christian
 

anonymous

New member
RE: Enzyme Issue

Hi there
I too was given the 'better the devil you know' answer from my doctor when i suggested we change me from Pancrease (which I'd been on for 14 yrs) to Creon. I wanted to try Creon because i was taking 5-8 pancrease with meals, but with Creon I'd only need to take 2-3. I accepted his response and continued with Pancrease - this meant regular stomach pains, bloating, gas and embarassing smells gallore........however I didn't ask my doctor next time, I 'told him' i wanted to give creon a go and thank goodness I did!! For the last 2-3 years my stools have been normal 90% of the time, I get virtually no stomach pains, no gas, no flatulence and I can proudly say that I smell better than a lot of ppl now in that department!! I suggest you try other enzymes if you are having stomach problems of any sort - i had accepted for years that my pains, gas, smells were just a part of having CF, but that isn't necessarily the case and I'm so glad I persisted - i will never touch Pancrease again!!

Kat (37 with CF, NZ)
 

anonymous

New member
RE: Enzyme Issue

Wow, Kat
Thanks for your reply. Yeah, I have always kinda accepted that this is part of my cf too. I'm sure some of it is, but I don't think it should be this frequent. Maybe I'll bring it up at my next visit.
Appreciated your response.
Christian
 
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