Major Aphthous Stomatis?

[Chico]

I was diagnosed with Major Apthous Stomatis at JHopkins yesterday, also called recurrent aphthous ulcers. Mouth sores for almost a year now.  And SjS.

Can't find anything in "Search" but was wondering if anyone was familiar with this diagnosis.

Thanks,
Chico

[Linda196]

I had this DX when I was a kid, and luckily seemed to grow out of it, but there were a few things i did before then that helped some.

I had to avoid certain foods (figs, cheese, tomatoes, lemon, vinegar, French mustard, chocolate, pineapples, apples, milk, wheat, and flour) in a rotation to see which if any of them made it worse, and one doctor made me a powder containing live yogurt culture that I had to spread on the canker sores, that did seem to help, but I eventually just started eating yogurt, and holding it in my mouth before I swallowed. The same doc suggested using toothpaste for sensitive teeth, because it doesn't contain the foaming agent in most pastes, and that can be quite irritating. I also had to rinse my mouth with cod liver oil ( ) for the extra vitamin B (remember this was many years ago) and that seemed to help too.

I think the most common suggestions now are to increase Vitamin B intake (always check with your doctor) and avoid any thing that irritates the mouth. Some people actually seem to get relief from using liquid antacids like a rinse, then swallowing it.

[Chico]

Linda,

Have printed out your insights, can find very little on the internet. Like the cod liver oil idea, would also soothe my very dry mouth. Am on two oral and spit strong steroids. Can I ask if you found wheat and flour made it worse? Think wheat is all from your list I still try.

Thanks,
Chico

[Linda196]

I had no problem with wheat, in fact the only thing I found that did aggravate it was chocolate, and when I realized that I tried avoiding plain white sugar too, and found it may have been a cause for me. Since I don't eat the first at all, and the second rarely, that hasn't been an issue.

[Liz D.]

I used to get those all the time.  Very painful!!  Once I got my diagnose of SJS and only used Biotene products and also started taking Evoxas, I haven't had one since.

Liz D.