Ulcer in my mouth

[gutless]

I have a lesion on my gum that I believe was started when I wasn't paying attention while brushing my teeth and used the wrong side of my toothbrush. :unsure: That was about 2 months ago and it still hasn't healed. My dentist referred me to a specialist, who wants to remove and biopsy the lesion.

I'm wondering what you all think about having this done. How will the surgery heal (I'd need stitches) if the original trauma won't heal? The specialist said it's important to biopsy it to make sure it's not Wegener's, as it could mean that the Wegener's is in another part of my body. I'm currently waiting for a hip replacement and a gyne surgery - neither doctor will perform the surgery until my Wegener's is in remission, which it's not. So I'm a little hesitant to have this small surgery performed - the lesion is tender but not unbearable.

Thanks.

[marta]

I know absolutely nothing and am an infant in the world of WG but as I'm sure you've already seen I ALWAYS have an opinion. I'm totally with you. I think it's nuts to do a biospy and create a new lesion to find out why a lesion is not healing on an immunosurpressed individual. If you know that Wegs is still active and the other surgeons wont cut you because of that, why would they want to do it to your mouth. As we talked about in another thread, it doesn't matter where Wegs is active in your body as the treatment is the same and being a systemic disease it likes to travel. So unless the reason is to settle their own professional curiosity, I can't see any benefits that outweigh the risks. I can see it being a problem if it's an infection - but in that case the solution is killing the bacteria or fungus not doing a biopsy.

Once again though, I know nothing and my reaction is totally a gut reaction, so take EVERYTHING I say with a grain of salt.

[Sangye]

Marta, I think you're doing great learning about Wegs! I have nothing to add-- you expressed my opinion perfectly.

[pberggren1]

I agree with Sangye Marta. And to add, you definitely know alot.

[elephant]

I agree with the above post. Lesions in the mouth are one symptom of vasculitis diseases. My sister had Nodosa ( autoimmune disease that attacks the blood vessels), and that was the first symptom she had, then the large rashes on her back and trunk and headaches. The only put her on high doses of prednisone for 6 months and she has been in remission for 10 years. She also has Raynauds disease.

[misskay]

one of my original symptoms was mouth ulcers. Small blisters along the gumline.... at the time I thought it was a reaction to meds in some way, then I was diagnosed with WG and did some research.... Use a medicated mouthwash available at the grocery, and brush your teeth often (yes, I know it is painful) to keep anything from becoming lodged inside the area and becoming infected. The good news is, they do go away as the WG gets under better control.

[JanW]

Why do they need to even make sure that the WG isn't in another part of your body -- in fact the assumption should be that it's WG, and since your WG isn't in remission, and you are continuing to be treated, there would be no further action taken on the biopsy.

[Sangye]

I think it's a very common mistake that non-Wegs specialists make.

[Sangye]

On the other hand... Gutless, as I look at your avatar I wonder if your mouth ulcers are coming from chewing on tennis balls. This would be a good time to break that habit. :wink1::tongue1:

[Jack]

Oh sorry, I had not realised!
It is terrible when steroids cause excessive hair growth like that.

:ohmy::wink1:

[gutless]

lmao! You guys are awesome. That darn prednisone!

So this ulcer should heal once I'm in remission?

The consult with the specialist cost me $165 and I even brought in the xray taken by my dentist. Unreal how much this stupid disease is costing me. I capped off my drug benefits in May, and I`m on Myfortic, Methotrexate injections, blood pressure meds as well as the cheap drug prednisone, so my monthly prescription tab is enormous. I didn`t need this added cost.

[elephant]

How many milligrams are you taking of myfortic and methotrexate? Are you on Bactrim too?

[gutless]

360mg myfortic, twice a day. I was on 720 twice a day but couldn't tolerate it.
80cc methotexate weekly
No bactrim

[misskay]

really? From what I've learned, Bactrim is almost always prescribed at some point. I've been on Bactrim DS since DX. Am now only taking it Monday, Wednesday and Friday instead of every day... it helps prevent PCP Pneumonia in those of us with lung involvement.

And yes, the mouth ulcer should heal if you treat it like any other open sore. Keep your mouth as clean as possible. But use the mouthwashes ect that don't contain alcohol (it burns like crazy). I've become a fiend about keeping my mouth, teeth and gums in good health since DX, esp since my dentist said unless it was an emergency, he wouldn't work on me until I had been off Chemo for at least 2 months.

[Sangye]

Bactrim is usually only used for patients on ctx--predisposes you to PCP-- and for some patients with upper respiratory involvement. My docs have never put me on it once I'm off ctx.

[Jack]

I found it very effective and did not start taking it until after I had finished with ctx. It stopped most of the minor infections that I had been getting.

[gutless]

Just googled bactrim and it's a sulpha drug - I'm allergic to sulpha. I do have lung involvement - just had a bronchoscopy and I'm clear of any other weird things in my lungs.

[marta]

I too am alergic to Bactrim so they put me on Dapsone. Apparently Bactrim does a lot of good for the sinus part of the problem, but I'm not into going in and getting an agressive finding at the hospital, so Dapsone it is. Hope your mouth feels better soon.

[barry2010]

Hi gutless I had a biopsy on my face just below my right eye where a mass had accumed they entered through my mouth where my lip and gum met I was in the grip of wg at the time it was sore afterwards and did take some time to heal it turned out it was all for nothing they only found a mass of gunk(in the surgeons own words) which was wg I hope everything goes ok for you

[Palmyra]

Yes, the excessive hair growth just makes him look cuddly and cute. So pred does have some benefits:rolleyes1:

I work with said 'specialists,' and treat those that have autoimmune manifestations in the oral cavity. If you want to share specific information, I can ask some questions that may allow me to understand a little more about the lesion in your mouth that is not healing. First questions would be, 'What medications are you taking?' And do you have any co-existing medical conditions?

Palmyra Jane, periodontics and oral medicine, Dallas, TX

[gutless]

Palmyra-
I have a history of ulcerative colitis but had my large colon removed in 1993. High bp but okay with meds. Sero-negative arthritis.
My meds are: Myfortic, Cipralex, Avapro, Amlodipine, Buspirone, Methotrexate injection, Leucovorin, Amitriptyline, Quetiapine, Prednisone, Actonel, Calcium, Vitamin D, Tramacet
Thanks!

[JanW]

I'm not on bactrim either, but have not yet had lung involvement.

[LisaMarie]

ok mouth ulcers are the worse ...during my recent stay at the hospital i developed a funky group of lesions on my tongue ...after several scraping and test...it wasa concluded as shinglies on my tongue...hurt like you would not believe and now i have a funky fish hook design on my tongue...that still hurts ...per ID it could be months before my tongue heals...it is better since I took the the antiviral for over 14 days...but still hurts....i always get weird lesions in my mouth and just blame it on my WG......hope yours gets better soon

[elephant]

Oh that is horrid LIsaMarie, could you taste anything? Soft diet?

[LisaMarie]

i lived on yogart mostly ...it coated my tongue so i could eat other things.....my taste is starting to return.....

[elephant]

How about smoothies, yum! Glad to hear that your taste buds are coming back.

[jola57]

LisaMarie, that is hurtful few months, glad it is getting better. I get sensitive parts of tongue and funky designs but the pain is managable. I just stay away from acidy foods

[Palmyra]

Palmyra-
I have a history of ulcerative colitis but had my large colon removed in 1993. High bp but okay with meds. Sero-negative arthritis.
My meds are: Myfortic, Cipralex, Avapro, Amlodipine, Buspirone, Methotrexate injection, Leucovorin, Amitriptyline, Quetiapine, Prednisone, Actonel, Calcium, Vitamin D, Tramacet
Thanks!

I think I am late getting back to this post...you may be getting better. If so, please disregard all of the following!!:biggrin1:

Wow there Gutless, you are on a small truck load of immunosuppressants, and the actonel combined....might make you at high risk for a little bone exposure, and possibly a bit of osteonecrosis. Osteonecrosis is generally not painful, looks white in the center, and does not heal. Did you name the site of the wound? (Be specific...upper or lower jaw, inside or out, close to the teeth, or is it on 'loose tissue'?)

Ulcerative colitis can also contribute to lesions in the oral cavity....they are usually on the inside of the cheeks, tongue or floor of the mouth. Same for reactions to chemo.

If it is on attached gingiva (meaning gum tissue that is attached directly to the bone, as opposed to loose mucosa,) I would be curious as to what your specialist recommended, as there is relatively little barrier to the underlying bone.

If bone is exposed, we treat with a little actonel holiday (usually 3-6 months) and provide a rinse of chlorhexidine gluconate that does not contain alcohol. Sometimes a round of antibiotics. The chlorhexidine is harmless in any event, and will make any oral lesion heal at a faster rate, including those caused by other chemotherapy. It may lead to a little temorary brown staining, that can be polished off by a professional.

If the lesion is expanding in size, or even simply not healing, I would see an oral specialist such as a periodontist or oral surgeon, and have them consult with your other providers.

Good luck and keep us posted,
Palmyra, BS, RDH with focus on periodontics/oral medicine

[DEE]

just been on the phone with wg consult to ask about do s and dont of dentist appointment and he kept repeating must get anti b cover before and after treatment and it was not until recently that antonel came into the equation.
trying a new dentist aswell they sound very helpful !!!!!

[gutless]

Went to my rheumatologist yesterday and she agrees that that I shouldn't have surgery on the ulcer unless the specialist suspects cancer. She will contact the specialist and discuss the situation.

Palmyra - The ulcer is right below my tooth so on the boney part. It was an oral surgeons office that I went to - the specialist I saw deals with oral pathology.

[elephant]

I agree, don't want to open up a wound unless it's really, really necessary.

[DEE]

just been on the phone with wg consult to ask about do s and dont of dentist appointment and he kept repeating must get anti b cover before and after treatment and it was not until recently that antonel came into the equation.
trying a new dentist aswell they sound very helpful !!!!!

ok dentist was very good but the end result she felt it would be safer to refer me to hospital dentist , to risky to do the treatment needed plus meds combination in the sugery so sehe is going to make urgent referal

[DEE]

ps she said they would prefer me to be on a higher dose of preds before treatment :w00t: ive spent weeks trying to come down no down to 15mg which is a record for me :biggrin1:

[LisaMarie]

one of my original symptoms was mouth ulcers. Small blisters along the gumline.... at the time I thought it was a reaction to meds in some way, then I was diagnosed with WG and did some research.... Use a medicated mouthwash available at the grocery, and brush your teeth often (yes, I know it is painful) to keep anything from becoming lodged inside the area and becoming infected. The good news is, they do go away as the WG gets under better control.
Were your teeth also suddenly severely cold sensitive....i have the gum line rash blisters or whatever they wanna call...it is also on the roof of my mouth......it sucks but I deal and carry denal flosser pics with me to avoid any food lodging......