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Possible Creon side effects: What helped you?

Posted by ajh5285 @ajh5285, Feb 14, 2023

I have a variety of Side Effects that are all listed as possibly related to Creon, the most troublesome being gas which seems to last hours. The NP I saw in the last week or so invited me to make a trial of not taking any Creon to see what happens.

Has anyone else had any experience with this approach?
Would you recommend it?

If I were healthy, I would be more willing to be adventurous...

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penelope52 | @penelope52 | Jun 3, 2024
In reply to @nazleer "I have loose motion and high blood sugars from taking Creon. I am having to take..." + (show)
Profile picture for nazleer @nazleer

I have loose motion and high blood sugars from taking Creon. I am having to take Imodium more often.

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Go online to read all side effects and you can also go to Abbvie.com, the manufacturers website. What you list can be attributed to this medication. I have a few side effects listed, but can't definitively say they are because of CREON. When I was diagnosed was under nourished and losing weight quickly. CREON has stabilized my weight loss and I have only mild vitamin deficiency issues, which could also be because of my age. I'm grateful someone figured how to treat EPI, AND found a treatment! Good luck.

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msmelnik | @msmelnik | Jun 5, 2024
In reply to @nazleer "I have loose motion and high blood sugars from taking Creon. I am having to take..." + (show)
Profile picture for nazleer @nazleer

I have loose motion and high blood sugars from taking Creon. I am having to take Imodium more often.

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I found an excellent Nutritionist. She taught me so much about Creon. How much you can take. When to take it. How it is necessary for nutrients to absorb. How it only lasts for 20 min. How much enzymes a healthy pancreas puts out. I highly suggest it. She said to go on u-tube. There are videos about this medicine that are very helpful. Best of luck to you.

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nazleer | @nazleer | Jun 6, 2024
In reply to @nazleer "I have loose motion and high blood sugars from taking Creon. I am having to take..." + (show)
Profile picture for nazleer @nazleer

I have loose motion and high blood sugars from taking Creon. I am having to take Imodium more often.

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Where is the Nutritionist? Can I contact her?

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penelope52 | @penelope52 | Jun 7, 2024
In reply to @nazleer "I have loose motion and high blood sugars from taking Creon. I am having to take..." + (show)
Profile picture for nazleer @nazleer

I have loose motion and high blood sugars from taking Creon. I am having to take Imodium more often.

Jump to this post

Your gastro should give you a prescription to see a nutritionist. There are numerous nutritionists listed online, but it would be better to find one affiliated with a major hospital. The one I use is in the main section of one of our hospitals. They mostly deal with diabetes and that is why most hospitals have them in house, so to speak.

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vector | @vector | Apr 18 11:16am
In reply to @ajh5285 "A bit of a tangent, but the gas and bloating from not having the Creon dose..." + (show)
Profile picture for ajh5285 @ajh5285

A bit of a tangent, but the gas and bloating from not having the Creon dose just right adds complications to trying to figure out what to wear for pants.
I have to avoid anything that rides too high on my belly because that adds to the low level pain from the tumor itself - an unpleasant constrictive sensation.
Ideally pants would also have ribbed knit cuffs, to keep me from tripping since my feet are numb a lot of the time ("Chemo Feet") and I get in trouble if I'm not watching where I'm putting them.
Anyone have a recommendation for low rise pants with ribbed knit cuffs for a short woman? (5"4" weight 127 lbs, when last checked 10 days ago)

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I may take heat for this, but what about ladies’ pregnancy pants.

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dusty5 | @dusty5 | Aug 19 6:15pm
In reply to @penelope52 "Tongue with a burning sensation and tingling started about 6 weeks ago. Have seen internist, gastro..." + (show)
Profile picture for penelope52 @penelope52

Tongue with a burning sensation and tingling started about 6 weeks ago. Have seen internist, gastro and dentist. None saw anything alarming. Take CREON for EPI and gastro told me a reaction to that usually starts when you first start this medication or for people who may chew the capsules (which you aren't supposed to do). Also have loud ringing in the ears. Read tongue issue can be vitamin deficiency, so added B Complex, Potassium, Niacin, Folic Acid and 10 mg liquid Iron, as my Ferratin was low, Started taking all over a month ago. There is one place on L side of tongue that is irritated and gets worse as the day goes on. Back to the dentist tomorrow to have him check to see if I have somehow chipped a crown and it is irritating tongue. Have an appointment with ENT, so she can have a look, as I know this is a process of elimination. My plan is to ask for an MRI of head and neck if I can't get this resolved, but with current complaint burning/tingling in tongue and nothing visible, I know a doctor will not prescribe, although I will pay myself if I have to, but still need orders from doctor. Also started taking Pepcid three days ago in case it is acid reflux, which I have had in the past.
Hope my Mayo Connect friends can help me figure this out. Thanks to all who read and respond.

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The comments made are almost the exact problems I am having. I have had all the test. Swallow Test, CT, UGI. I just found this BNS. They have also sent me to a neurologist. I had the parkinson's disease which came back neg. (thank God!). I have to see in in 2 months and I will discuss this BMS with him. I sure hope this helps me! I will be forever grateful! So tired of living this way!

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sanfan | @sanfan | Aug 20 9:55am
In reply to @penelope52 "Tongue with a burning sensation and tingling started about 6 weeks ago. Have seen internist, gastro..." + (show)
Profile picture for penelope52 @penelope52

Tongue with a burning sensation and tingling started about 6 weeks ago. Have seen internist, gastro and dentist. None saw anything alarming. Take CREON for EPI and gastro told me a reaction to that usually starts when you first start this medication or for people who may chew the capsules (which you aren't supposed to do). Also have loud ringing in the ears. Read tongue issue can be vitamin deficiency, so added B Complex, Potassium, Niacin, Folic Acid and 10 mg liquid Iron, as my Ferratin was low, Started taking all over a month ago. There is one place on L side of tongue that is irritated and gets worse as the day goes on. Back to the dentist tomorrow to have him check to see if I have somehow chipped a crown and it is irritating tongue. Have an appointment with ENT, so she can have a look, as I know this is a process of elimination. My plan is to ask for an MRI of head and neck if I can't get this resolved, but with current complaint burning/tingling in tongue and nothing visible, I know a doctor will not prescribe, although I will pay myself if I have to, but still need orders from doctor. Also started taking Pepcid three days ago in case it is acid reflux, which I have had in the past.
Hope my Mayo Connect friends can help me figure this out. Thanks to all who read and respond.

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I have what is called Burning mouth syndrome. I go to our university hospital for it. They haven't been able to help, but have advised some changes. They had me change to a tooth paste called Squigle. They had it available at their pharmacy for $10 a tube. You can get it online , but it costs a little more. Make sure you brush your tongue when you brush also.

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