Burning Mouth Syndrome: Anyone had success with compounded mouth rinse

Posted by nestletea @nestletea, Aug 16, 2021

I am a Mayo patient in Jacksonville, FL and have been suffering from BMS since January 2021. I have tried every natural remedy and food modification that the Mayo dermatologist recommended, with no success. The capsaicin rinse was not tolerable and caused mouth ulcers. My Mayo doctor just prescribed a compounded Clonazepam mouth rinse (.1mg/1ml) to "swish and spit" up to 3 times daily (5 ml at a times). Has anyone found success with this regimen? If so, how long did it take for symptom relief and at what dosage?

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glen48 | @glen48 | Jan 25 3:19pm

I was diagnosed in November 2025. Dentist & ENT ordered compounded ' Magic Mouthwash. Helps for a few hrs. ENT gave me Gabapentin which helps quite a bit. I've changed toothpaste, & cut out all caffeine & most sugar, absolutely no chocolate. Ugh. Nothing takes it completely away.

elove1122 | @elove1122 | Feb 15 2:23pm

In reply to @loribmt "Hi @kcarson123 and welcome to Mayo Connect. Oh my gosh, I’m so sorry for your loss...." + (show)

@loribmt

Hi @kcarson123 and welcome to Mayo Connect. Oh my gosh, I’m so sorry for your loss. I can’t even imagine losing your husband at such an early age. What huge adjustments you’re having to face. The stress and emotions can have a profound impact mentally and physically.

Burning mouth syndrome is not a welcome situation. I just went through a couple of episodes of that myself. I do have a pre-existing medical condition that has spawned this but it still stems from an autoimmune response so I’m wondering if the med my doctor prescribed might also benefit you.

It is a steroid RINSE called dexamethasone .05 mg/ml.
For burning mouth it used off label as it’s NOT swallowed. So you won’t have the side effects of oral steroids.
I had to rinse for only 30 seconds and then spit it out. Then no eating or drinking for a half hour. 12 hours apart.
It was a game changer for me! Within a couple of days my mouth was 99% improved. Only one little patch of irritation remained and for that I have a topical gel that has been working like a miracle. But for the general burning mouth, the Dexamethasone rinse works like a champ. If I feel it returning I can use it as needed. It’s worth asking your doctor.

Also, if you haven’t already, stop using any product with mint such as toothpaste or mouth rinses and use non-mint dental floss. I had to switch to children’s toothpaste and found that Bert’s Bees Children’s paste works really well with no burning tongue! I also use a small children’s toothbrush now too.

There seem to be trigger foods for me such as anything salty, crunchy, acidic or super cold!
So no pickles, mustard, hot sauce, chips, salsa…you get the picture. But lately I’ve been able to reintroduce a little ketchup! Yay.

Over the counter mouth rinses such as Orajel or simple lukewarm saltwater rinses can help sooth the mouth.
Have you tried Orajel or salt water rinses?

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@loribmt Thank you so much for all the information. Can you say more about the topical gel that works for you please?

Lori, Volunteer Mentor | @loribmt | Feb 15 3:56pm

In reply to @elove1122 "@loribmt Thank you so much for all the information. Can you say more about the topical..." + (show)

Hi @elove1122 The topical ointment I referred to is a prescription medication: Tacrolimus ointment 0.1%

It’s generally prescribed by dermatologists for certain skin conditions. But the directions I was given by my hematologist-oncologist are actually ‘off-label’. While it’s not common, it can be used use topically orally in some cases.

By the way, welcome to Mayo Clinic Connect. Are you suffering from burning mouth syndrome?

elove1122 | @elove1122 | Feb 16 8:26am

Thank you so much for responding and yes I am suffering from burning mouth for the past few years. I am taking clonazepam .125mg dissolving on my tongue which I don't think is doing much. Interestingly, when I wear my mouth guard (initially made for my teeth grinding) I noticed that it helps. I had my dentist make me thinner retainer -like guards that I can wear during the day.
I am new to this group as I am looking for any other treatments that can help.

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