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...

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

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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My mom has burning mouth syndrome. You might want to look that up and see if you have those symptoms.

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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 discovered that whitener in tooth paste was the cause of burning and irritating tongue/ mouth. I used Sensodyne tooth paste for years. My dentist suggested I try a different toothpaste just to rule it out as a cause. When I stopped using it did resolved. I used Colgate regular toothpaste. Then I started using whitening toothpaste. Symptoms returned in a big way. After ruling out all other possibilities as listed in your comments, I suspected toothpaste again so returned to regular no whitening and now symptom free! I noticed they had added Whitening some years back to Sensodyne toothpaste which started all those symptoms. I hope it maybe as easy a solution as this for you.

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Profile picture for dcbs @dcbs

I discovered that whitener in tooth paste was the cause of burning and irritating tongue/ mouth. I used Sensodyne tooth paste for years. My dentist suggested I try a different toothpaste just to rule it out as a cause. When I stopped using it did resolved. I used Colgate regular toothpaste. Then I started using whitening toothpaste. Symptoms returned in a big way. After ruling out all other possibilities as listed in your comments, I suspected toothpaste again so returned to regular no whitening and now symptom free! I noticed they had added Whitening some years back to Sensodyne toothpaste which started all those symptoms. I hope it maybe as easy a solution as this for you.

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Thank you for your input.🤸‍♂️💕💪

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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 had burning sensation on my tongue and roof of my mouth. I had bloodwork done to check my vitamin b deficiency and it came back fine. She stillI suggested that I take vitamin B complex. I no longer have the sensation. I don’t take any of the medications that you mentioned. It’s worth trying.
Good luck!

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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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As an FYI, should this happen to anyone else, this is a process of elimination, as most things are. I am now trying Biotene, as recommended by my dentist. I am 85% better,so it may be low nutrients. I did have low Ferratin and am taking iron and added other supplements. I go to the ENT next week for her to have a look and will report back, if she has anything enlightening. Thanks to everyone.

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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.

Jump to this post

I've had a burning mouth and tongue for years. It gets a little better if I brush my teeth, I will ask my doctor about vit. B complex! Thanks.

REPLY
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.

Jump to this post

I wouldn't guess an MRI out of your pocket would be worth it. It's not going to tell you why you have a burning mouth. A gastroenterologist would be a better use of your money. Just a thought.

REPLY
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.

Jump to this post

Thanks so much. I should probably go back to the gastroenterologist. I have been to the internist, dentist twice and gastro once. ENT next week. I was thinking MRI to rule out any kind of tumor, but will ask ENT to have a look down the throat. It is steadily improving with addition of iron and B complex, folic acid and niacin to pill regime.

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Profile picture for penelope52 @penelope52

Thanks so much. I should probably go back to the gastroenterologist. I have been to the internist, dentist twice and gastro once. ENT next week. I was thinking MRI to rule out any kind of tumor, but will ask ENT to have a look down the throat. It is steadily improving with addition of iron and B complex, folic acid and niacin to pill regime.

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Yes an ENT visit is very important. Not to scare you but my close friend had a form of mouth cancer. Was seen by dentist multiple times, fitted for mouth guard, switched toothpaste etc before our ENT diagnosed. She has gone through all the treatment and is cancer free now but it was a tough one. Things that would make the burning worse for her were spicy foods and alcohol. She was not the typical mouth and tongue cancer patient as she had never used tobacco products, drank much or a male. Best to be safe and rule things out as you say with an MRI. Best of health to you.

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

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