Mouth Sores: I currently have 3 mouth sores, but... - LUPUS UK

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Mouth Sores

LucyK5821 profile image
18 Replies

I currently have 3 mouth sores, but otherwise feel fine. This would be rather a symptom of the disease and not a flare since I otherwise feel fine correct?

Thank you!

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LucyK5821 profile image
LucyK5821
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18 Replies
2jayjacqui profile image
2jayjacqui

I too suffer from mouth sores and ulcers. My dentist referred me to the Dental Hospital, who took a biopsy from my mouth. I was then diagnosed with a Lichenoid Reaction, which is similar to Lichen Planus. I was advised to follow a cinnamon and benzoate free diet.

Maitelady profile image
Maitelady in reply to2jayjacqui

Lyzine supplements from a vitamin store will banish the mouth sores! I was given some from a friend who suffers from MS for his mouth sores and Lysine works - but you must try taking them everyday for a month or two - this works.

misty14 profile image
misty14

Hi Lucy

Mouth sores when otherwise you feel well can also be a side effect of drug treatment depending on what your on!. I find Difflam mouthwash helps them as it has a steroid in it so numbs the pain. You can have it on prescription as it's expensive. If they don't get better then it would be wise to get them checked out by your doctor or dentist. X

lupy profile image
lupy in reply tomisty14

I have also been having mouth sores alot i havnt found anything that has worked for me yet. My doc has been thinking out of the box and suggested behcets.

misty14 profile image
misty14 in reply tolupy

Hi lupy

Your doctor is being very thorough thinking of behcets with persistent ulcers. Have you tried Difflam?. Hope you get an answer soon. X

lupy profile image
lupy in reply tomisty14

I have indeed nothing has worked my dentist is very un helpful im willing to try anything at this point so any suggestions would b fantastic.

misty14 profile image
misty14 in reply tolupy

Hi lupy

Good thing your doctor is thinking about Behcets as there so resistant to treatment!. X

Maitelady profile image
Maitelady in reply tolupy

Try the Lysine for a month - I bet you will see great improvement - I have Lupus but my friend has MS and Lysine worked GREAT on both of our ailments.

lupy profile image
lupy in reply toMaitelady

Thanku so much i will try that xx

LucyK5821 profile image
LucyK5821

I just started Plaquenil maybe 2 1/2 weeks ago 2x 200 mg a day.

Maitelady profile image
Maitelady in reply toLucyK5821

I hate Plaqenul because it happens to make my gastrointestinal tract miserable - nausea a lot - but supposedly the side effects go away in like a couple of months??? I liked the low dosage of Methatrexate??? Better. I have to start back in Plaquenil right now too. I guess I will check back with you and see how you are feeling on this medication.

wsjkcj1 profile image
wsjkcj1

I have mouth sores from Sjogren's syndrome. I often have mouth sores with no other flares. I usually use the steroid mouth wash for a couple of weeks and it will go away for a while. I'm guessing it's a flare but not a significant one.

JEM23 profile image
JEM23

Hello, I often get mouth sores which are as a result of taking methotrexate. I take folic acid on the days I do not take methotrexate but when things get really bad I come off this for a week to give my mouth chance to heal. I have it again at the moment, but I honestly think it's more to do with the drugs than the Lupus I'm afraid. It's rubbish isn't it but at least methotrexate helps to keep the Lupus under control - usually.

Maitelady profile image
Maitelady in reply toJEM23

Yes you must take Folic Acid regularly while on Methotexate - my Rheumatologist did the same thing with me while on it and yes the Lupus symptoms lessened while I was on it.

I am on nothing right now because I have no insurance, and boy do I feel lousy!

EOLHPC profile image
EOLHPC

As I understand it, my mouth lesions & inflammation are caused by overlapping infant onset SLE + vascular ehlers danlos + early onset Sjogrens + hypogammaglobulinaemia . I get oral soft tissue symptoms 24/7 all year round regardless of the meds I'm on. During flares, I get even more of this going on.

That's just my version of this 😏. I manage by avoiding scratchy foodstuffs, using gengigel mouthwas & gel + prescription topical steroids....over the decades, I've tried everything else...this stuff is what helps me most. Take care 🍀🍀🍀🍀 coco

Iona467 profile image
Iona467

I have them every 6 week when I have a flare up, so hard to eat and drink and they are under my tongue also. GP not interested, went to see her and she didn't see any apart from one just staring on my tongue. Gave me nothing for it, basically just live with it, same as I always get with my GP.

Maitelady profile image
Maitelady in reply toIona467

Your doctor is not helping you enough. Seriously. Can you switch to another Rheumatologist??? I been through 3 Rheuma's so far and 2 of them were uncaring like your doctor is - this last one actually worked through many things - it was a journey between doctor and patient and what a relief it as to have a doctor that cared - the difference in doctors is HUGE.

Iona467 profile image
Iona467 in reply toMaitelady

Has such problems after changing my first Ruema, the old one tried to get me kicked out of the hospital for all further treatment, incredible. Luckily the hospital rang to find out why. I also have eye, back, arthritis, blood pressure, fibro, diabetes, all treated at the hospital, why would I want to go elsewhere! GP said she would cancel all treatment and I would have to start again if I went elsewhere. Not ideal.

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