Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » Sores/Ulcers in my mouth from Crohns/Remicade

07-06-2011, 11:28 AM   #1
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Join Date: Jun 2011
Sores/Ulcers in my mouth from Crohns/Remicade

I am in the midst of a terrible breakout in my mouth with sores/ulcers due to the Crohn's and Remicade treatments. I've been using Biotene mouthwash and Kanka sore medication I can brush on my tongue. This bout is extremely bad and my tongue feels like I put it in a flame it is burning so bad and I can barely eat or talk. Does anyone have any other suggestions - quick please!
07-06-2011, 12:25 PM   #2
Lisa's Avatar
Join Date: Apr 2010
Location: New York

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I occasionally break out with mouth sores (stomatitis) - I believe it is related to the herpes simplex (cold sore) virus...

How about something like a chloraseptic spray to at least numb it?

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
07-06-2011, 12:39 PM   #3
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Join Date: Nov 2010
Location: Dayton, Ohio
I used to get mouth sores all the time. Luckily they stopped for me. They always came a week or two before my next Remicade infusion. After stopping then restarting Remicade, and it not working, the point of finally moving off of Remicade was when I got a really bad case of the sores. Had them everywhere in my mouth, and even down my throat, so bad it killed me just to drink water. At that point my doc (finally) decided to stop Remicade, start Humira, and do a course of steroids, which started helping quite quickly. He also gave me some mouthwash that gave me relief (although only for like 10 or so minutes), but that gave me the chance to get a quick meal in, which definitely helped. Hope it all works out for you!
Crohn's since December 2002

Total Colectomy with Ileostomy 1/26/12, 14cm rectum left

Imuran 225 mg daily
Prednisone 17.5 mg daily, tapering
Entyvio every 8 weeks
07-06-2011, 03:01 PM   #4
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Join Date: May 2011

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My first symptoms were actually mouth ulcers. I had them bad for two years before I was diagnosed and they were terrible. Nobody had any idea why I kept getting them, I went to both my doctor and my dentist but neither had any answer. I was prescribed some medicine by my dentist but it didn't work well. Now that I'm in remission I haven't seen any which I'm thrilled about. The way my GI doc explained it was that crohns can effect your whole GI tract from your mouth to your waste elimination area (to put it nicely) and mine was especially bad in my mouth. Maybe your GI doc will have a solution.
07-06-2011, 03:13 PM   #5
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bruscar's Avatar
Join Date: Jan 2009
Location: wexford, Ireland
get to the hospital mate, i have told my story of mouth ulcers before.

worst 6 months of my life!!

candida was what i had, absolute nightmare.

get to the hospital and get it checked out

good luck

5 surgeries,(so far!)Crohn's colitis,permanent ileostomy,post herpatic neuralgia (from shingles)
07-06-2011, 03:32 PM   #6
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I have had mouth ulcers since I was a child, and it seems to be running in the family. I was always told to put a tiny amount of alum salt (called alun in Norwegian) on the ulcer. It really doesn't taste good, but it has always done the trick. It feels as if the sore just closes up, and it disappears within a day.

I obviously cannot guarantee that it has this effect on everyone, and of course people should be cautious because this advice is very "unofficial", as it is just knowledge that has been running in the family for generations. But it really has helped me out a lot, because as you all know the mouth ulcers are particularly painful and makes it difficult to eat etc. So if you try it, let me know if it works for you too!

Here is an article in wikipedia that I found:
- Sophia
07-06-2011, 04:18 PM   #7
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Location: New York, New York

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you may need to stop rhemcaid for a little. I had to stop humira because of them.

rinsing your mouth with benadryl. also vodka (you can rinse or drink0 it numbs nicely after a momentary burn.
Good luck
Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron

Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » Sores/Ulcers in my mouth from Crohns/Remicade
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