Zenpep side effects - ideas?

Posted by habook @habook, Mar 16, 2020

So after 2.5 years of taking every test known to humans. Go to a great GI doctor in Dallas and told her the same thing I told all the other drs. And boom she puts me on zenpep. Yes I have lost 12 lbs, yes I feel like my muscles are now getting proteins. But I have other side affects. I am not sure from MEC or type off food. Like I just ate a sandwich and my whole body is on fire. Some times I get rashes. My body still aches but not as bad before meds. And tramadol does nothing to help. Anyone with ideas. I haven’t taken hydros in 3-4 years but seems like it would help. But it’s not worth the effort to get a dr to write?????

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Lisa Lucier, Moderator | @lisalucier | 6 days ago

In reply to @ericawiersfischer "It took a year after total distal pancreatectomy and splenectomy to convince my doc's I needed..." + (show)

@ericawiersfischer

It took a year after total distal pancreatectomy and splenectomy to convince my doc's I needed PERT, I had tried PERT in the past prior to surgery, but they decided it is overprescribed and took me off it. I didn't respond well to Creon, and I do well on Zenpep, so they put me back on Zenpep, I don't have those side effects you mentioned. The GI symptoms have subsided thank goodness which was the goal. I did find this though...

Drugs.com is considered a reliable, pro‑science medical information source, rated “Very High” in factual reporting by Media Bias/Fact Check and recommended by the U.S. FDA as a trustworthy drug‑information website.
Rare Side Effects of Zenpep (Pancrelipase)
Rare but serious side effects of Zenpep include fibrosing colonopathy, severe allergic reactions (including anaphylaxis), and hyperuricemia (high uric acid levels)
Key Rare Adverse Effects
1. Fibrosing Colonopathy
A rare, potentially serious bowel disorder linked to pancrelipase.
Symptoms: severe abdominal pain, trouble passing stool, nausea, vomiting
Requires urgent medical evaluation; immediate treatment may be needed.
2. Severe Allergic Reactions
Can include anaphylaxis, a life‑threatening reaction.
Signs: rash, itching, hives, swelling of hands/face/mouth/throat, hoarseness, trouble breathing or swallowing
Call your doctor or go to ER immediately if these occur.
3. Hyperuricemia (High Uric Acid)
Pancrelipase may increase uric acid, leading to joint pain, stiffness, swelling, or back/side pain
Seek medical advice if you develop these symptoms.
4. Mouth Irritation
Rarely, capsules may cause irritation if not swallowed whole, crushed, chewed, or mixed into inappropriate foods
Prevent by following dosing instructions exactly.
When to Seek Medical Help
Contact your healthcare provider or seek emergency care if you experience:
Severe or persistent abdominal pain, especially with bowel changes
Signs of allergic reaction or breathing difficulty
Joint pain, swelling, or stiffness
Prevention Tips
Swallow capsules whole with water unless your doctor instructs otherwise
Avoid inhaling powder if mixing capsules into food
Bottom line: While most Zenpep side effects are mild, rare but serious reactions exist. Prompt recognition and treatment are key — report any unusual or severe symptoms to your doctor right away.

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@ericawiersfischer - thanks for the info you shared. Will you please share the source of this info in case others would like to look it up?

sassy26 | @sassy26 | 5 days ago

In reply to @artperdiem "Can't afford prescription. any over counter alternative to Zenpep" + (show)

@artperdiem I couldn’t afford either but there is a foundation called NORD( National Organization for Rare Diseases), that you can sign up through and get meds free. I doubted it, but they came through, sent through mail by CVS Specifically. Then later picked up at local CVS. ZenPen gave me a lot gas and couldn’t tolerate. Creon effects worst.

Leeman25 | @leeman25 | 5 days ago

Now exactly 3 years since having full Covid in October 2023, during which and after which, I had persistent diarrhea symptoms. took the Paxlovid "horse pills" which I am not sure helped; as my wife had Covid same time frame, and didn't take the Paxlovid) No difference in her recovery; but she doesn't suffer from loose bowel syndrome, either.

Have seen 3 gastroenterologists; 4/2024, for a Colonoscopy, urged by my PCP, who said "Oh, they will be able to see if you have a cause for the diarrhea". The M.D. looked at me emptily, and told me to see him in 6 weeks. No diagnosis.

Saw a second Gastro specialist, who wanted to repeat the Colonoscopy 7 months later, did a bunch of tests, nothing showing. Saw a third Gastro specialist 6 months later; who couldn't come up with any likely cause; but again, scheduled another Colonoscopy with a colon biopsy. (Just had to re-schedule due to respiratory illness complications.)

None of these specialist would have me see a Dietician, or to suggest MAYBE I have a reaction to a specific food. Tested out twice for Celiac which mother thought I had first year of life, could have been colic. Reaction to wheat cereal and toast...So I decided to reduce my intake of wheat products, which has helped; but I am not avoiding all wheat products, just 70% of my former intake.

Of all the specialists and surgeons I have seen since 2002, spine issues with successful outcomes; cardiology surgery with successful outcomes; what is going on in Gastroenterology? They seem to have no clue, and just order more colonoscopies while they type in front of me. What did their predecessors do without AI? Used their education and common sense.

Anyone have anything constructive to add? I am so weary of seeing Gastroenterologists with nothing to show but more repeat procedures. 3 years now. Maybe I'm better off using AI myself and coming up with ideas?

Thanks.

dt61 | @dt61 | 4 days ago

In reply to @leeman25 "Now exactly 3 years since having full Covid in October 2023, during which and after which,..." + (show)

@leeman25 Each of us are own best advocate. We know what happens to our bodies whenever we do, or don't do or consume anything; liquid or solid. I have learned from peoples reviews that there is not 1 person who has "the same" condition since for most come here for help and direction have compound issues. The only way to find a personal menu is to start with a blank sheet of paper and add items on the good column and others on the "nope, no way" column. I do understand frustration revolving around all of this but think about this in light of truth of a situation. Drs have limited time with each patient, they also use diagnostic tools to try that aid in their diagnosis'. If we each had unlimited funding and a Dr along with a dietician who was at our side 24/7, they still would not have the understanding the individual has. But imho, your cutting the intake is a good start. This is a life long, until we leave planet earth; unique marathon for each of us.

venture | @venture | 4 days ago

Any Dr. AFTER REMOVING PARTS OR ALL of you your pancreas who says you don’t need PERT is an idiot. How the hell are going to digest food???? Also fibrosing is see with people with cystic fibrosis .

lady86 | @lady86 | 4 days ago

So what does one take is cannot take the products?

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