Mouth Ulcers

Been thinking about starting a thread on this for ages. Can't see one on the go already. I keep starting a post and not finishing it and then end up not posting it, so I'm just going to post something to kick the thread off and add resources to this as we go. OP might look a bit mixed up to start with but I'll sort it out later.

I'm a long time sufferer, 20+ years. I get outbreaks every few months on my tongue or around the inside of my lips. Always painful, always ulcerate, always take ages to heal, always make me miserable when I get them.

Adding http://www.mouthulcers.org/mouth-ulcers which is as old as the internet itself

Subjects I was going to touch on:
-General moans about Adcortyl not being available any more, Corsodyl killing your taste and making your teeth go brown etc etc
-Vitamin C = pain and makes flare-ups worse, SLS in toothpaste does the same (blue Sensodyne is SLS-free)
-Deficiencies in B vitamins, iron and zinc
-Ulcers appearing while run down/stressed

Reserved space for detail on the points above - last updated 03/02/2020

Treatments:
There are three effective treatments that I know of. There is a corticosteroid paste called Adcortyl in Orabase, there is a chlorhexidine-based mouthwash called Corsodyl and there are hydrocortisone pellets you can buy in the chemist called hydrocortisone buccal tablets.

-Adcortyl. This is a sticky paste that coats the ulcer and contains a corticosteroid triamcinolone. This is the only treatment I've found that actually works and will heal even the most persistent painful ulcer within 48 hours. Annoyingly, it was discontinued a few years ago and is unavailable. I'll still mention it because all long-term ulcer sufferers remember it as the only product that actually worked. The orabase part is still available as Iglu, but it only serves as a protective covering and has no active ingredient. I haven't found it much help. You can get similar triamcinolone pastes from abroad. One is Trinolone Oral Paste. I've found this is ok, but not as effective as Adcortyl and it doesn't stay in place as effectively. It is also minted, so it burns a bit when it is in place. Another alternative is Kenalog Oral Paste though I can't remember if I tried this in the early days when Adcortyl became unavailable. If it's the one I think it is, it was much more liquidy than Adcortyl was and didn't stay in place.

-Corsodyl. Corsodyl kind of works. I find it's quite effective if you can start using it as soon as you feel a flare coming on, and it'll stop the ulcers coming up. However, this stuff mucks with your sense of taste for about a week and your teeth will get stained brown - these are two side-effects that I really struggle with. Last time I used it in anger was about 4-5 months ago and my teeth are still badly stained, despite hitting it with a strong whitening toothpaste. For that reason, I only resort to Corsodyl as a last resort.

-Hydrocortisone buccal tablets. These are usually what are prescribed by the GP if you mention mouth ulcers, but you can buy them off prescription. They're quite expensive and I've seen them between £7-£14 for 20 tabs. I've tried to persist with these but had mixed results, so because of the cost I'm reluctant to immediately recommend.

-When mouthulcers.org had a discussion area, some people were grinding the hydrocortisone tablets to a powder and mixing it with Iglu to make an active paste. I didn't have a lot of success with this, personally, but I would like to revisit.

Mental and physical stress was the main trigger for mine, and learning to manage those better has massively reduced the number I've had over the last few years.

I'd also been begging to have my tonsils removed for nearly 15 years, as I was getting monthly tonsillitis. Soon as they were out, things began improving on the ulcer front, so I'd obviously had some low level infection for years. A couple of years of gently building up exercise amounts to boost my immune system (rather than going out, hammering it, then getting outbreaks) has helped enormously

Sleep, well-being, and sorting the root cause has helped me more than any switching of toothpaste and supplements ever did.

EDIT: Oh, and cutting out refined sugar as much as possible. I don't mean never having it ever, just not putting it in tea/coffee, and not snacking on sugar based stuff throughout the day

^ I've never managed to find the root cause of mine. There's always been a combination of factors which, even with a food and sleep diary, I've never managed to narrow down other than 'run down' being a common factor.

I think I actually get two types of ulcer. I think the ones I get on the inside of my mouth are your common garden ulcer caused by damage, from biting it while chewing, a sharp bit of food etc. The ones on my tongue I think are herpes simplex (coldsore) virus. I had a huge outbreak about 9 months ago which was all over my tongue and down my throat and ended up going to the emergency walk-in centre to get it seen to. I lost about 1/2 stone in total because I couldn't swallow anything. This was a herpes simplex outbreak. I've just had an outbreak of similar ulcers/sores on the front of my tongue with similar burning sensation on my inner lips, so I think that's what it is in that area.

How much sugar do you eat?

My mouth gets destroyed during ultra racing, most often when I've gone a couple of days eating sweets. On proper food this doesn't seem to happen, although the rate at which I stuff things into my face means I will often have bitten the inside of my cheeks while eating but I'm guessing this isn't your issue.

Its a long shot, and not a perfect match for what you describe, but have you seen this condition before?

https://www.aaom.com/geographic-tongue

This thread is useless without pics

How much sugar do you eat?

Not massive amounts. Boiled sweets will usually give me ulcers, but I put that down to the sharp bits slicing my tongue. I generally tend to avoid.

How much sugar do you eat?

Interesting. I've always suffered regular bouts but have recently cut out a lot of sugar and the last few months I haven't had a serious outbreak.

I also changed to a natural toothpaste about a year ago which seemed to help a bit but not too much. Something about the ingredients in regular toothpaste fucking up your mouth biome(?)..

Edit : Should add that I used to sleep on my face (pre broken collarbone) and was obviously somehow gnawing my gums in the process. So its an ill wind and all that.

This is why I switched to real food rather than sugars when riding, and replaced maltodextrin drinks with starch based ones instead

Depends on duration. I've had no problem using -only- sugar during 24hr races. Extend past a day though and bad things begin.

Herpese Simplex very rarely affects the inside of the mouth, usually only the external lips. Any of of you ever have eye pain / redness / blurring? I recommend seeing a good rheumatologist. They may ask you to see an ophthalmologist for careful exam. Bechets disease comes to my mind while sitting across the Atlantic.

useless without pics

Feel for you, recurrent apthous stomatitis / recurrent oral ulceration not nice. Have you been referred to your local oral medicine specialist. They can prescribe a home made substitute for adcortyl in orabase or suggest something else. I guess you have eliminated the usual foodstuffs like fizzy drinks etc.

Funny you say bechets. My girlfriend has been recently diagnosed with bechets and gets mouth ulcers. It’s apparently a very rare condition this bechets and little is known about it.

She uses some toothpaste from Aldi as it doesn’t have sodium lauryl sulphate in, which can be a trigger for ulcers

I go through phases of getting a few and/or sore patches on my tongue. It's usually a sign that I should get more sleep, eat less crap and change my toothbrush.

Recently discovered Hydrocortisone buccal tablets which do a good job of getting rid of the little bastards if they’re deep in the gum / mouth crevice, but any ulcers in close lip vicinity* mean the tablets don’t stay in situ and can’t do their job properly.

*Like the one I’ve got now, RUINING my coffee

I’ve long read that hot food, hot drinks, spicy foods and Marmite should be avoided. Is that because it hurts like fck to consume them, or do they actually impede recovery, or make the ulcers worse?

I have them fairly chronically, mainly brought on by stress or being run down. Damage to the mouth tissue can also lead to them if your prone, i used to Thai box/box and would often get them after tough sessions that involved spitting blood. I find dealing with the route cause tricky as there's so many variables to deal with. As an example i have a bad mouth ulcer right now which i'm fairly sure has come from me having a cracked rib atm. Sleeping and riding are tough so invariably i'm getting run down and now i have an ulcer. Not much i could do to prevent that.

So for me it's mainly down to managing them better when they arrive. That includes no SLS (use Pronamel), let my food and drink cool to warm not hot (and avoid hot drinks from hipster metal bikepacking mugs at all costs), no spicy food and as much sleep as possible. Iglu offers decent protection but doesn't relieve pain like it used to for me and sensodyne anti-bac mouth wash can help.

So far this year I’ve made two changes; reduced bread intake to as close to zero as is practically possible, and switched to SLS-free Lidl toothpaste (as recommended on here).

So far this year I’ve not had a mouth ulcer. And I used to get them almost weekly.

Funny this should pop back up as I'm managing the beginning of a flare right now. Temporarily switched to the SLS-free Sensodyne toothpaste and I really ought to ditch the coffee for a week since I know that irritates the flare something chronic. I know the answer right now is to hit the Corsodyl mouthwash, but I still haven't shifted the stains on my teeth from last time.

It can be a real stainer corsodyl.
Warm salty water helps .. low tech but no stains .
Spicy food and weirdly tomatoes have anecdotally been reported as aggravating factors .

Spicy food and weirdly tomatoes have anecdotally been reported as aggravating factors

These can be quite painful to eat when I have a flare. Funny you should mention that though, I often start craving hot food when I'm about to have a flare.

I've started to add some detail in post #2

I'm currently in the process of being diagnosed with what looks like it'll be Crohn's/Colitis, at every step I've been asked about mouth ulcers, so if you're getting bad/regular outbreaks it might be worth keeping an eye out for any other symptoms (eye irritation, joint pain, alongside the more obvious intestinal stuff) and seeing your GP if in any doubt.

I have a lot of sympathy for the level of recurrence some on here are having. I dont get anything like the frequency but I do get some particularly brutal mouth ulcers, often bigger than a 5p, when i'm extra stressed and suffering from poor sleep.

The link with sugary food is noticeable but lead to much smaller issues, likewise ill sometimes get a small ulcer or two if coming down with something.

When I was a teenager I was referred to specialist as I had a massive single ulcer in the join between tongue mouth. They were pretty dismissive, offered no special treatments beyond saying salt water would be helpful and Anbesol 15 min before eating to take the edge off. I basically still do this whenever anything kicks off, and I always have Anbesol at home in case, It hurts a lot when you put it on, but the pain fades and you get some merciful relief for a while.

My dad, grandad, uncle and sister are all similar sufferers.