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drz
12-22-2010, 04:09 AM
I got diagnosed yesterday as having aphthous ulcers in my mouth. Gums are sore and bleed when brushed. Inside of cheeks have large sore areas.

I know every time I see my rheumatologist they ask about sores in my mouth and look for sores. Are these sores part of Wegener's or one of many side effects from all the meds i take?

They are giving me some meds for pain and changing my acyclovir to something stronger I guess. They told me the sores should heal in a few weeks.

misskay
12-22-2010, 04:25 AM
I also had the mouth sores... mine were just prior to DX, sore, bleeeding gums with little blisters all around the teeth and the roof of the mouth. I think I read somewhere that they are a symptom of active WG.

ScreaminMeanie
12-22-2010, 04:26 AM
Nobody ever told me what they were called, but the first time I was dx'ed with WG, my gums had ulcerated and granulated to the point where they covered half my teeth. They were very sore and bled when touched. I could only eat soft food for a couple of months until I was finally dx'ed and began treatment. But it was just my gums - never the inside of my cheeks.

I forget - are you on MTX? MTX is also known for causing mouth sores. I just Googled aphthous ulcers, and they are described as canker sores. So this sounds to me (based on my limited knowledge) more like something that would be caused by MTX than by the WG. Hopefully someone more knowledgeable than me will chime in here soon.

Palmyra
12-22-2010, 05:18 AM
Hi there DRZ,
I am a dental hygienist, more specifically 25 years in periodontics/oral medicine. Oral ulcerations are just the beginning of the GI tract, with teeth attached. Makes things complicated. Apthous ulcers typically only occur on 'unattached' mucosa...meaning inside of cheeks, loose mucosa just under the 'attached' gum tissue. They vary from small (a few mm's in diameter,) to major apthea ( 10+mm's,) and are characterized by a cratered lesion, with a red halo boarder, and a whitish center.

Apthous ulcers do not affect the gum tissue directly surrounding teeth (keratinized or attached gum tissue). If you have bleeding gums, that is simply a co-morbid condition, and can be caused by a wide variety of things. What drugs are you on? Look up chemotherapy induced oral mucocitis, as this is a separate/ different condition from apthea. Gum tissue can bleed from simple bacterial infection (gingivitis to periodontitis,) chemotherapy induced problems, or autoimmune related conditions ( ie, errosive lichen planus, etc..)

If you like, you can send me a private message, and maybe I can be of help. Rinsing with a mild dilution of baking soda and water is a good way to neutralize the pH of your mouth (acid is bad on ulcerated tissue,) and I can provide more advice as needed.:biggrin1:

drz
12-22-2010, 05:58 AM
Thanks for the info. I just stopped taking Cytoxan today due to low WBC. They plan to try Imuran next after WBC recovers. My prescribed some meds and rinse I will try. I read these sores often follow some trauma to mucous lining of the cheek like from eating chips and I remember poking my cheek are with a hard pita chip a few days before the outbreak. Never had these sores before but then I haven't had problems with Wegener's until recently either.

Palmyra
12-22-2010, 08:02 AM
I would guess the primary culprit is the Cytoxin, especially if it has affected your WBC (that causes thinning of the mucosal lining, making it very easy to tear). Can take 10-14 days to heal. Standard rinse is the baking soda/water (about a heaping tablspn in a 10 ounce glass) several times a day...very soothing, and no ill effects.

elephant
12-22-2010, 08:21 AM
I would tend to believe the sores could be WG. But it could many other things...virus, bacteria infection, medicine, nutrient deficiency, irritation....
I know someone who had these ulcers in their mouth, and they went away when they induced her with very high dose of Prednisone. She had a rare autoimmune disease (PAN), it is listed under the Vasculitis Foundation web site.

Palmyra
12-22-2010, 02:18 PM
You are right about other types of vasculitis having symptoms that include oral lesions, elephant...Bechet's is notorious for oral lesions as well. In oral medicine, we have learned that where the lesions occur can be strongly indicative of what might be driving them. With Bechet's the lesions tend to be on the hard palate. My daughter also has Crohn's disease, and it can drive oral ulcerations as well.

I would guess most on this site have had issues with cutaneous lesions prior to diagnosis, or when in a severe flare. Histo-pathology is still the best means of diagnosis.

Yep, they treat Bechet's, PAN, Crohn's all with high dose pred and many of the same drugs used to treat Weg (methotrexate, imuran, cel cept, the biologics...) I keep hoping that some miracle cure will present itself in one of the more common AI diseases, that will also effectively address Weg.

Some much to learn, but I do believe that at the rate medical tech/research is moving, we really will have a cure in the not to distant future.

Good luck with the mouth sores drz