Getting sores

I'm having those white inflamed sores in my mouth which hurt very much. I've been having them badly since a week but in general longer. Are these connected with IBD?

I would say it is the humira and MTX That is causing your mouth sores. Both these meds have that side effect. I am on both these meds and everytime i go to the doctor, he always checks my mouth for sores. Are you taking folic acid with the MTX? If not, i would get on that asap. it will help with the mouth sores

Hi Andrina,
I do not have much advice for you just now.
I do want to say I hope you get relief soon!

The points mentioned above are great points.
Sometimes, if none of those points apply, we aggravate our mouths with some toothpastes, some foods, etc.

If you find you are getting canker sores, there is a well-known dentist whom talks about this and also whom mentions toothpaste ingredients which may aggravate this. His name is Dr. Katz. If you google that name, you will find the related info.
I have to stay away form "tartar control" toothpastes. They make my mouth raw inside.

I hope you feel better soon!
With Gratitude,
~HH~

XtraOrdinaryGuy- Interesting. So sorry this happened to you. Thanks for sharing this though! Wow.

Oral lesions-to-ulcerations could be Pyostomatitis vegetans.

Currently I'm on the tail-end of three weeks of oral lesions, the third severe episode in the past year. My providers have discounted my complaints, despite the objective evidence, blaming GERD.

The first time it happened was so painful that I was begging to have my head cut off.
Saw the GI & ENT docs. Got an upper endoscope, capturing a photo of an ulcer on the folds above the vocal cords. At that same upper GI scoping, I also got the sigmoid scoped, documenting the UC had spread to 20cm = proctosigmoiditis. The second go-round left me with a bronchial bacterial infection from the spastic cough provoked by the ulcerated & "scabbed" esophageal mucosa.

So, at the beginning of this current go-round, I obsessively documented the progression.
It started with little tender papules on the margin and under my tongue. Then, multiple pimple-like lesions sprouted and slowly ulcerated on the root of tongue, below the adenoids, and the back of my throat, down the esophagus toward the glottis. It feels like a burn injury from swallowing acid, and is painful to swallow. Last week I did my own online search of the medical literature, and here is what I found.

Pyostomatitis vegetans is a long-known, specific marker of UC. It seems to flare when the UC flares. The standard of care is focused on getting the underlying IBD in control. Meanwhile, there is no consensus on if & how to treat the oral lesions, other than steroids & immune suppression for the severe cases.

Here's what I've collected in my home pharmacy to manage symptoms of these oral flare-ups:

1) First Mouthwash BLM (Benedryl + Lidocaine + Magnesium), aka "Magic Mix"

2) Codeine cough suppressant syrup

3) Chlorhexadine hydroxide mouthwash

4) Cepacol & Chloraseptic lozenges - with the active ingredient Benzocaine

5) Naproxen & Tramadol for pain

All o f the above meds are by prescription (in the US), except the lozenges.

Anyone else out there with recurrent episodes of severe oral/esophageal ulcerations? For some of us, this extraintestinal manifestation of UC is not inconsequential, just as the axial & peripheral arthritis of UC can be substantial.

Adrina, I hope this information helps. Thanks for bringing it into our forum for discussion.
Denny Rae

I am in the process of getting tested for Celiac

Don't put too much stock in that. The tests for Celiac are notoriously unreliable as they only test for one (or a few) of the many different types of glutens. They also don't test at all for gluten sensitivity which is very different altogether. The elimination diet is definitely the way to go to see how you react to specific foods.

FYI, my sores were diagnosed as pemphigus vulgaris, a very nasty auto-immune disorder.

I used to get them terribly and they are quite common for us IBDers...I finally got them under control when I started taking probiotics, reason being is those sores are related to bacteria and generally we IBDers tend to have bacterial overgrowth, with taking a good probiotic daily and indefinitely it can (did for me) aid with the horrid mouth ulcers/sores as well as some gut relief as well.

I had the huge pimply body sores too.

I don't consider myself to have active pemphigus anymore as it's been completely controlled through diet. I am not taking any medications at all for IBD or pemphigus anymore.