Ok, this sounds weird but I get a sore tongue and my mouth burns when I eat pistachio's. It's not the salt. I wonder if I have an intolerance issue? Anybody else have this issue with certain foods?
With auto immune diseases we often will develop new allergies. I loved oranges and pork but can no longer tolerate them.
I will add that I had the burning mouth many years ago and I cant say that it was related to anything I ate. Actually, if something bothered my mouth I did not eat it. However, I do believe that the burning mouth is part of the autoimmune issues and wonder if it is related to a neuropathy that affects the nerves that affect the oral cavity. Sort of here today for months or years and then stops for a while.
That is not to say that I won't get it back again cause that is how autoimmune diseases seem to operate. Good luck. IRish
Deb, I agree with both Joe and Irish. Joe because if you have burning tongue/mouth, and if something hurts like the dickens, you equate the discomfort with it thus develop an aversion to the food.
And Irish statement -> not knowing it were related to anything [we] ate. I had things which made it worse--if that was possible. I found a product thru a dentist which calmed my tongue. It worked, I used it for well over a year. It never healed it, but did make me infinitely more comfortable. Within that same year + I stabilized my saliva med...which helped. Then the magic cure was offered: (but NOT for my tongue)...for sjs. That was Low Dose Prednisone (LDP). It took about 6 months..and the tongue was healed, the aches almost disappeared, and other SjS related aggravations. The rheumy had zero idea about the burning tongue/mouth. She noted that was an improvement in my symptomatology...and that was it.
With that glowing report, do not believe I recommend this treatment. I am 74. I started the LDP at 72. I was on 5mg per day for a year. Then 4, then 3, then 2--which was like taking baby aspirin. I have leveled out to 3mg now. I just went thru a month of PT for balance...and stirred up some aches and pains in places. With torrents of rain and cold here, I have added an extra milligram twice. The thing is, if you are young, they don't like you to take this stuff as it eats your bones. And for you, LONG TERM. I am at end of life. (don't feel sorry for me--this is fact of life.) I hadn't taken it but for a Medrol pac for sinus infections...so I was a tabula rasa so to speak. At least medicinally! :) A stretch there!
The product which calmed my mouth is OroSoothe. Avlbl @ Amazon or manufacturer. Easily found via google. btw: OroSoothe is an "oral wound gel." It was formulated for oral cancer patients post chemo/radiation.
Good luck...I feel for you. This was a miserable condition. And...it will rear its head periodically. I don't increase the prednisone...I use the Orosoothe for a few days, and it calms down.
Best to you,
ccc
Thanks Joe, Irish and Court for your responses. I've had it when my mouth just burned regardless before I had Sjogrens and was on any meds. At first, I thought it was an allergy to toothpaste......
It's strange b/c it doesn't always happen with the pistachios but it sure does give you an aversion to the food-:(((
I've backed down on my dose of plaquenil because of side effects, that might be why this is happening. I've had some joint pain too this week. Ugh!!! Unless it's life saving, I can't take prednisone, it raises my blood sugar too much.
Deb, I think I know the feeling you're describing. If I'm right, then I have the same. It kind of comes and goes, sometimes worse, sometimes none at all. I'm labeling it with "hypersensitivity" or "pre-allergy". Nuts are bad in that regard. So are strawberries, kiwi fruits and pineapple. Tomatoes - especially when the birches are spitting out their pollen (cross-allergy). During that time I also can't eat raw carrots. Chocolate. Lately I've been having a bad time with that symptom: Had to stop eating mandarines, blueberry juice stung my tongue - even banana!!!
Not sure if this issue has something to do with chemical sensitivity, too. But the only thing to do as far as I know is avoid the problematic foods. I can do that - except with chocolate!!!
If I ever go to a doctor again, I'll ask for an allergy test for various foods.
I think you may be onto something eija with the food sensitivities. I just hope that it doesn't get any worse. I don't think the dry mouth helps the situation.
I have a weird problem with my taste buds falling out. Geographic tongue. Sometimes it's sensitive. Certain foods can set it off. It's not an allergy because I can eat those foods at other times with no problem. Just something I've learned to live with. It's better on my Neurolink supplement. Neither I nor any doc has any idea why.
Oral Allergy Syndrome?
Quote from: Nymph on February 17, 2017, 06:29:41 PM
I have a weird problem with my taste buds falling out. Geographic tongue. Sometimes it's sensitive. Certain foods can set it off.
This. Anything acidic, like mustard/ketchup, soda (especially grape), etc., usually the worst in the morning with breakfast. But yeah, it only effects me certain days.
I'm wondering if geographic tongue and SJS are linked.
Yes, they are.
great thread with good info in it, thanks all
I can relate to a lot of it--I had thought there was a correlation of getting burning mouth (mildish) flare after I had fluoride treatment at last dental cleaning--I had liked it another office where they used high tech equip to do it but this place was more old school and something about it didn't sit well. I don't think fluoride in toothpaste necessarily sets it off but something about that cleaning did. I know that sodium laurel sulphate in toothpaste definitely irritates my mouth and notice improvement right away after stop using it. And Prevident prescription toothpaste which has fluoride and MI paste with that and calcium phosphate etc help my gum pain.