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Thread: Negative reaction to enzymes, anyone pretty familiar with them?

  1. #1

    Negative reaction to enzymes, anyone pretty familiar with them?

    Hey guys, first off sorry for having a ton of questions, I'm new to being treated for cf and this forum has been great.

    I was wondering if anyone has ever has any adverse reactions to enzymes? I was prescribed zenpep and every time I take it I have an adverse reaction, the best way I can describe it which sounds odd is I basically have the symptoms that the enzymes are meant to help. I will have bad stomach pains as soon as I eat with them and then go to the bathroom where I have floating loose stool, but any other time my stool sinks normally. But what's worse is I get the worst intergestion ever with them like a tightness in my chest where I feel like I have to burmp, but cant, along with pain and tenderness in my upper right quadrant, like where my gallbladder or liver would be (possibly pancreas?) then I end up throwing up and getting very sick for the rest of the day. The symptoms will go away if I don't take them for the rest of the day, I will start feeling okay again the following day. My GI doctor told me to stop taking them, which I have and will follow up with my cf center and see what they can do, but I was wondering has anyone else had this experience?

    I want to put some weight on and I know the enzymes are an important step, but they are making me feel terrible to the point I am eating worse and vomiting a lot more because of the symptoms they are causing. This has happened every time I've taken them which is about 7 times in total and I have taken them with my "safe meals" to make sure it isnt the food causing it.

  2. #2
    I think you should contact your cf center right away about this. I have not heard of this being an issue for anyone before, but i do know there are different kinds of enzymes. Maybe you need a different brand.
    my son experienced the complete opposite when he started taking creon enzymes. It is probably one of the best things that has happened to him.
    i do know you should not be feeling sick like this from taking them, and this warrents intervention from you cf doctor. Good luck.

  3. #3
    I would discuss it with your doctor. There are other enzymes. I've not taken zenpep before but I had to switch brands because of other issues. It could also be the dose you're taking.
    Male - 52 yr old, DF508 & CFRD, diagnosed at age 2, married 25+ yrs, two teenage daughters, 4 sisters w/o CF, lost my brother who was 14 to CF in the early 70s

  4. #4
    Hey guys, I went back and told them and after looking at my bloodwork they said because of my lipase numbers the fact that I have no vitamin deficiencies, they believe that I'm not pancreatic insufficient yet, so they took me off of them. I have a ton of stomach problems stemming from what theyre calling gastroperesis, so it's hard to tell if if I need the enzymes or not to be honest cause eating and drinking in general has just been hard.

  5. #5
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    How you gotten the genetics back yet because if you are pancreatic sufficient Kalydeco should work for you and help you stay healthy and maybe prevent you from going to PI. I'd see ASAP when they'll have the results.

  6. #6
    Quote Originally Posted by Aboveallislove View Post
    How you gotten the genetics back yet because if you are pancreatic sufficient Kalydeco should work for you and help you stay healthy and maybe prevent you from going to PI. I'd see ASAP when they'll have the results.
    Hey, what's up, I haven't gotten them back yet, just sent out the bloodwork for them this weel, but I am anxious to see what the results are. They told me they think I have a mutation that just effects the pancreas and is pretty rare, but won't know for sure until they get the results. My lung function tests came back normal for a 26 year old they said, so I'm happy about that, now if could just fix these horrible stomach problems I've been having for the past half a year, things would be a lot easier lol

    I'll definitely bring that up in my next visit, thanks!

  7. #7
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    That pain in your upper right abdominal quadrant is typical of pancreatitis and/or a gallbladder attack. There's nothing inherently wrong with Zenpep or Creon and Pertze for that matter. They shouldn't even be affecting you for at least an hour or so after taking them because they normally release in the duodenum or small intestine about two hours after ingestion, give or take an hour.

    Unless you were losing weight and having really rotten stools, I'm not sure why they are prescribing enzymes. Actually, I sort of do. Once I was diagnosed with CF, I was put on Creon 500's which was in essence a blind stab at diagnosis by medication, seeing if I noticed any improvement. This seems to be a fairly common practice and it bothers me because understanding what an improvement might look like was not explained. In fact it isn't simple to discern small improvements.

    If you want to determine your ability to properly digest foods, your pancreatic function, gallbladder function or bile transit and such, you need a rare doctor. I suggest Dr. Steven D. Freedman at BIDC in Boston. Dr. Freedman likes to "let science prevail" and for good or bad, your pancreas can be evaluated and any digestive enzymes quickly titrated or adjusted. Don't live in misery, if you aren't much better soon, get thee to somebody like Dr. Freedman

    Enzyme titration for me, the process of getting the right amount got worse, a lot worse before it got better. I had chronic hard constipation for decades. Two of those decades, I was traveling constantly and it was intense. An average trip was six weeks and I usually flew to 7 or 8 countries or a full circumnavigation of the world or half way around and back. Most people that live out of a suitcase and sits in meetings, the cabs, airports and airplanes have ridiculous thin bodies with large pot bellies and I was no different. For all of that misery with a Thai meal exploding between meals of gluten noodles and duck feet, life was good compared to when my pancreas started to screw up.

    Even though my hard constipation was due to chronic dehydration and the endless sedentary hours, enzymes at first seemed to be ruining my digestion. All I could pass was a gassy peanut butter like poop. With incremental increases in my enzymes, the food was beginning to reduce in volume and become mor dense. From the way you describe things getting worse, I wonder if what you are actually experiencing is food that hasn't been treated with enzymes. The only way my doctor could explain why I seemed to have hard but digested feces was the possibility that very little digestion was happening before entering the large bowel. The massive amounts of probiotics in the large bowel reduced or digested my food.

    The amounts of Creon that I am successful at digesting food is about mid way in the dosing instructions. Going from 5 Creon 12's to 5-8 Creon 36's seems like a leap. After switching GI doctors a few months ago I wanted to try titrating again but start near the highest dose rather than repeat lower dosing. Meeting half way was a good trick. Now I have formed stools again and being smarter about hydration, constipation, soft and hard are almost a thing of the past. Almost.

    I discovered with formed, dense and heavy stools that my daily bowel movement now took two days. In order to make sure it doesn't go past two days I am drinking even more water/electrolytes, a gallon in total per day. My gut is still incredibly tender and though my gassy stools of old never weighed the gut down, I really feel food moving through my intestines now.

    My thought is this, try larger steps in dosages of Zenpep and see if the issue isn't your needing much more enzymes to make things work right. You may be taking just enough to make a mess of your gut.

    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  8. #8
    Quote Originally Posted by LittleLab4CF View Post
    That pain in your upper right abdominal quadrant is typical of pancreatitis and/or a gallbladder attack. There's nothing inherently wrong with Zenpep or Creon and Pertze for that matter. They shouldn't even be affecting you for at least an hour or so after taking them because they normally release in the duodenum or small intestine about two hours after ingestion, give or take an hour.


    Unless you were losing weight and having really rotten stools, I'm not sure why they are prescribing enzymes. Actually, I sort of do. Once I was diagnosed with CF, I was put on Creon 500's which was in essence a blind stab at diagnosis by medication, seeing if I noticed any improvement. This seems to be a fairly common practice and it bothers me because understanding what an improvement might look like was not explained. In fact it isn't simple to discern small improvements.


    If you want to determine your ability to properly digest foods, your pancreatic function, gallbladder function or bile transit and such, you need a rare doctor. I suggest Dr. Steven D. Freedman at BIDC in Boston. Dr. Freedman likes to "let science prevail" and for good or bad, your pancreas can be evaluated and any digestive enzymes quickly titrated or adjusted. Don't live in misery, if you aren't much better soon, get thee to somebody like Dr. Freedman


    Enzyme titration for me, the process of getting the right amount got worse, a lot worse before it got better. I had chronic hard constipation for decades. Two of those decades, I was traveling constantly and it was intense. An average trip was six weeks and I usually flew to 7 or 8 countries or a full circumnavigation of the world or half way around and back. Most people that live out of a suitcase and sits in meetings, the cabs, airports and airplanes have ridiculous thin bodies with large pot bellies and I was no different. For all of that misery with a Thai meal exploding between meals of gluten noodles and duck feet, life was good compared to when my pancreas started to screw up.


    Even though my hard constipation was due to chronic dehydration and the endless sedentary hours, enzymes at first seemed to be ruining my digestion. All I could pass was a gassy peanut butter like poop. With incremental increases in my enzymes, the food was beginning to reduce in volume and become mor dense. From the way you describe things getting worse, I wonder if what you are actually experiencing is food that hasn't been treated with enzymes. The only way my doctor could explain why I seemed to have hard but digested feces was the possibility that very little digestion was happening before entering the large bowel. The massive amounts of probiotics in the large bowel reduced or digested my food.


    The amounts of Creon that I am successful at digesting food is about mid way in the dosing instructions. Going from 5 Creon 12's to 5-8 Creon 36's seems like a leap. After switching GI doctors a few months ago I wanted to try titrating again but start near the highest dose rather than repeat lower dosing. Meeting half way was a good trick. Now I have formed stools again and being smarter about hydration, constipation, soft and hard are almost a thing of the past. Almost.


    I discovered with formed, dense and heavy stools that my daily bowel movement now took two days. In order to make sure it doesn't go past two days I am drinking even more water/electrolytes, a gallon in total per day. My gut is still incredibly tender and though my gassy stools of old never weighed the gut down, I really feel food moving through my intestines now.


    My thought is this, try larger steps in dosages of Zenpep and see if the issue isn't your needing much more enzymes to make things work right. You may be taking just enough to make a mess of your gut.


    LL



    Hey LL, hopefully I can get some more answers soon, as they did a stool sample and some more bloodwork. She suggested that I might not need the enzymes yet, as I'm not totally pancreatic insufficient at the point and that most of my problems are stemming from the gatroperesis. But yea, that upper right quadrant pain, I seem to get that pretty often. They ran blood work and a ton of scans and everything looked okay with my pancreas, but when they did a hida scan, my galbladder did not show up for the first two hours, not till they added the cck. This worries me because they didn't do anything about it, they ssort of just said sometimes that happens, but that doesnt sound normal to me, especially with the pains I get there.


    I'm going to try to see doctor Freedman over the summer, as I've heard his name suggested numerous times. I'm still waiting on my gene test and a lot of other results at the point, so there's still a long road ahead. It's been hard, but I have good days and bad days which is an improvement because for about a half a year it was pretty much all bad days and misery. Now I'm eating a drinking better with motility agent meds, still not back to normal, but a lot of improvement. Just wish the doctors will figure everything that needs to be figured out, so I can get the right treatment.


    Thanks for your reply, I appreciate it!

  9. #9
    Mike:

    As usual, LL is correct. See Steve Freedman ASAP, don't wait.

    Bill
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  10. #10
    Pancreatic elastase test came back >500, so they're saying I'm not pancreatic insufficient now ._.

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