Anyone else dealing with painful mouth sores and burning mouth?

Posted by blacksabbath @blacksabbath, Jun 17, 2023

Sjogrens bms is making life a living hell

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I use to get painful canker sores before being diagnosed with celiac disease

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Profile picture for mannism @mannism

Mine is gut-related. When the microbiome is healthy, I do not have a problem. When I do, I use liquid dexamethasone, otherwise known as " the magic mouthwash." Any dentist can prescribe it.

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Dexamethasone is a very strong steroid. 6 times stronger than prednisone.

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Look at side effects of your medications. This happened to me after infusions, or pills for my PsA.

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Absolutely been one year now of having something happen in my mouth. rashes, burning tongue looks like rash. Bumps on my tongue, large ones around where the last teeth are. or under y tongue on my spit glands. canker sores. Just constant something hurting in my mouth;
I have seen two dentists, an oral pathologist and an ENT. NONE of them could give me an answer and actually said they had not met anyone like me and my mouth.
So have you find out anything? finally looked up and found this page. I have had it a year and did not even think to try here.

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I get sores on lips and in mouth the day after taking my methotrexate.

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I do , at first I thought it might be cancer ( having had breast cancer , now everthing is cancer ( or not ) but I have had it for so long it cant be.

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Profile picture for 2SelfBTru @klancee47

Absolutely been one year now of having something happen in my mouth. rashes, burning tongue looks like rash. Bumps on my tongue, large ones around where the last teeth are. or under y tongue on my spit glands. canker sores. Just constant something hurting in my mouth;
I have seen two dentists, an oral pathologist and an ENT. NONE of them could give me an answer and actually said they had not met anyone like me and my mouth.
So have you find out anything? finally looked up and found this page. I have had it a year and did not even think to try here.

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@klancee47 I have identical symptoms. I went to an oral path and he did two biopsies of tongue. Hard to do but needed to figure out after two years. The biopsy said Oral Lichen Planus. There isn’t a cure. Autoimmune so trying to live with it. Have an appointment with Mayo oral medicine soon. I am on Plaquinil now for 5 months and feeling a tad bit better. Use special toothpaste. No alcohol etc. steroids for lips which came last with symptoms. Hope you can find answers. This all started after Covid. All the Dr and dentists say mine looks so different than anything they had seen. Same story.

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Profile picture for kjoeme1978 @kjoeme1978

@klancee47 I have identical symptoms. I went to an oral path and he did two biopsies of tongue. Hard to do but needed to figure out after two years. The biopsy said Oral Lichen Planus. There isn’t a cure. Autoimmune so trying to live with it. Have an appointment with Mayo oral medicine soon. I am on Plaquinil now for 5 months and feeling a tad bit better. Use special toothpaste. No alcohol etc. steroids for lips which came last with symptoms. Hope you can find answers. This all started after Covid. All the Dr and dentists say mine looks so different than anything they had seen. Same story.

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@kjoeme1978 Thank you that is what after all the appointments I have had that I found nothing and my search on the DR Google. That I decided that it probably was (Oral Lichen Planus) and yes I also found there is no cure, but I do think that mine is might activated by certain foods or vitamins that I take, because they might have something in them.
I know that sense my 20's I have not been able to eat citrus fruit now I think that the citrus or vitamin C (ascorbic acid) that they add to so many things is the cause. That is the one thing that has repeatedly been in something I have taken or drank and quit. They put it in everything. Have you thought of this and checked to see if this is a problem for you?
I have stopped everything right now that I think did it. I will start my vitamins back up once I have one clear week with no breakout. If that happens then I figure that what I am doing at that moment (food supplements prescription) is OK, I will figure they are not a problem. So I will slowly again start adding my removed foods and vitamins one at a time to see which one it might be.
I hate this. AND I keep searching and asking hoping to find that someone found an answer.
God Bless you and together I hope we find an answer.
I do eat healthy, keto and intermittent fasting. But this has been happening for over a year. I see that yours has been two years, OH, I am so sorry.
You mention you are on Plaquinil, I will look that up, and I have been given by dentist and oral pathologist mouth washes to buy and I just can't stomach them. I had to quit all tooth pastes bout five years ago from side effects and toxic load. I have eliminated all toxic food and household toxins from my diet and my house. I don't eat any ultra processed food because I know they do it.
I have been to two dentist one oral path and one ENT, none of them have any idea. None of them would do a biopsy. I thought it might be cancer.
Please let me know if you find out anything new about it, I am sure we have the same thing.

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Having both Sjogrens and Lupus, when flare ignite, mouth sores appear as well. Given that I am on HCQ and methotrexate - the sores develop and I take folic acid that helps. Mouth rinses & omitting acidic fruits and food until they hesl.

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Profile picture for kjoeme1978 @kjoeme1978

@klancee47 I have identical symptoms. I went to an oral path and he did two biopsies of tongue. Hard to do but needed to figure out after two years. The biopsy said Oral Lichen Planus. There isn’t a cure. Autoimmune so trying to live with it. Have an appointment with Mayo oral medicine soon. I am on Plaquinil now for 5 months and feeling a tad bit better. Use special toothpaste. No alcohol etc. steroids for lips which came last with symptoms. Hope you can find answers. This all started after Covid. All the Dr and dentists say mine looks so different than anything they had seen. Same story.

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@kjoeme1978 Do you have side effects from Plaquinil? Thanks.

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