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

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Welcome @blacksabbath, Mouth sores can be pretty miserable. There are a couple of other discussions where you can meet others with similar symptoms and learn what they have shared.
--- Burning Mouth Syndrome (BMS): Anyone found any relief?: https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
--- Sjogren’s Syndrome – Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/sjogrens/.

Mayo Clinic has some treatment information that may be helpful here:
"How do you treat Sjogren's mouth sores?
Yeast infections in the mouth should be treated with antifungal medications. Treat systemwide symptoms. Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren's syndrome. Drugs that suppress the immune system, such as methotrexate (Trexall), also might be prescribed."
--- Sjogren's syndrome - Diagnosis and treatment: https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221.

Has your doctor suggested any treatments like antifungal medications to help with the sores?

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@johnbishop

Welcome @blacksabbath, Mouth sores can be pretty miserable. There are a couple of other discussions where you can meet others with similar symptoms and learn what they have shared.
--- Burning Mouth Syndrome (BMS): Anyone found any relief?: https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
--- Sjogren’s Syndrome – Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/sjogrens/.

Mayo Clinic has some treatment information that may be helpful here:
"How do you treat Sjogren's mouth sores?
Yeast infections in the mouth should be treated with antifungal medications. Treat systemwide symptoms. Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren's syndrome. Drugs that suppress the immune system, such as methotrexate (Trexall), also might be prescribed."
--- Sjogren's syndrome - Diagnosis and treatment: https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221.

Has your doctor suggested any treatments like antifungal medications to help with the sores?

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It kinda looks like my Mucous Membrane Pemphigoid.
Very painful.

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I e had horrible canker sores for decades. I finally tried L Lysine, 500-1000mg daily and it worked! I also keep Kenalog in orabase on hand if one breaks through. I hope you find this helps.

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Yes, I have had them for years. 1. If you smoke, quit. 2. They can be (mine are) genetic. Check OMIM.org. Get in touch with a Genetic Sequencing Lab for at least a basic sequencing. Or find a good geneticist /oncologist. oldkarl

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@judithelizabeth

I e had horrible canker sores for decades. I finally tried L Lysine, 500-1000mg daily and it worked! I also keep Kenalog in orabase on hand if one breaks through. I hope you find this helps.

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Thank you so much. Just got one this week. I used to use this for Cold Sores.
Gina5009

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My lips have been burning since covid started.They burn so bad the skin peels! I gave up going to the Dr, he doesn’t know what the problem is. I’ve been to dermatologist, allergy specialist , natural path , ENT , dental oral surgeon! They are very red and I can feel the burn travelling around my mouth. Tried natural lip salve, antibiotics, nothing works. Anyone have any insight on this, I’d greatly appreciate it. I had shingles on my arm in 2019 after I got the shingles shot. This seems the same on my lips as I had on my arm, surely it can’t be shingles, how could they last that long and the Dr wouldn’t be able to figure it out.

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@smoir

My lips have been burning since covid started.They burn so bad the skin peels! I gave up going to the Dr, he doesn’t know what the problem is. I’ve been to dermatologist, allergy specialist , natural path , ENT , dental oral surgeon! They are very red and I can feel the burn travelling around my mouth. Tried natural lip salve, antibiotics, nothing works. Anyone have any insight on this, I’d greatly appreciate it. I had shingles on my arm in 2019 after I got the shingles shot. This seems the same on my lips as I had on my arm, surely it can’t be shingles, how could they last that long and the Dr wouldn’t be able to figure it out.

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I am so sorry to hear of the problems you are experiencing. I don’t know what has happened that I am having the same problems. This is all new to me. I have always been able to eat spicy foods (not extremely hot) but lately I have even had to change toothpaste and mouthwash. Had to stop using any of the usual ones and had to purchase some that is much more expensive. Very puzzled about this whole thing. I did not get the Covid vac.
If you are interested the names of the toothpaste and rinse I use now, please let me know.

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@smoir. I’m so sorry you’re having this problem. I can just feel it! Have you thought about finding a long covid clinic in your area? You said it all started with covid so the staff there might have an idea.
Is you scroll just above your post, you will find other members discussing something similar and the solution they found. This link, to another discussion, may also help:
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
Please let me know what you learn!

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Hello- I just mean I’ve been going through this since covid, I don’t think it had anything to do with covid,! I had a shingles shot in 2019, that was about the time this all started. I can’t use toothpaste, mouthwash etc! Any lip balms that are minty burns my lips. They burn 24-7, no relief at all.

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@smoir. Maybe you didn’t have covid as we know it, but what you have may be a manifestation. Also have you gone to a major medical center or university medical center? All the doctors are 1 step above what we have in community hospitals.
Take some of the suggestions to your PCP , and explain that others have found it helpful and you would like to try them. Or better yet, take your phone/iPad/android with you and show them the discussions!
Do you think that’s possible?

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