1. < Autoimmune Diseases
Profile picture for blacksabbath

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.

Profile picture for krg351
krg351 | @krg351 | Feb 5 7:15am
In reply to @okaykassien112321 "@krg351 I thought the same thing thing! I have Behçet’s disease and my mouth ulcers used..." + (show)
Profile picture for okaykassien112321 @okaykassien112321

@krg351

I thought the same thing thing! I have Behçet’s disease and my mouth ulcers used to look exactly like those featured in the image above before I was able to get my symptoms under control. They’re called apt boys ulcers and they hurt like hell. I get them orally, vaginally, and in my nose and throat but thankfully not anymore. I take Otezla and that has basically kept me in remission for the past 8 years or so. Colchicine also helps immensely. I hope this helps and I’m sorry you’re suffering.

Jump to this post

@okaykassien112321 this sounds exactly like me! I get them in my throat, mouth, and recently on my vag. Not fun. My doctor wants to put me on Otezla but it can only be prescribed by a specialist and my insurance won’t cover it so for now I’ve been trying other options.

REPLY
Profile picture for zinnia55
zinnia55 | @zinnia55 | Feb 7 5:48pm

I am on my 2nd month of Low dose naltrexone. I just titrated from 1.5 mg to 2.0 it keeps the OLP at bay so far. My only complaint is th elow dose naltrexone has side effects. I have had a lot of digestive issues and as I titrate up it causes flu symtoms. I am going to stick it out for 2 week and move up another .5 mg. My Dermatologist belives if we can grt it calm down after 6 months of LDN then I will taper off the naltrexone. I hope this is information someone can use. I hate this disease.

REPLY
Profile picture for wisco50
wisco50 | @wisco50 | Feb 7 10:24pm
In reply to @sueinmn "@sprice After suffering severe mouth sore outbreaks for many years, I truly feel your pain. I..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@sprice After suffering severe mouth sore outbreaks for many years, I truly feel your pain. I always knew some outbreaks were triggered by certain foods, but avoiding those wasn't enough. Many years ago, one of my kids suggested I eliminate wheat from my diet as a possible culprit, and for me it worked.
My brother had similar outbreaks, and discovering his cause wasn't as simple, even after extensive allergy testing. He went on an strict "elimination diet" to discover his triggers. This worked for him.
Have you tried anything like this?

Jump to this post

@sueinmn
When I was a kid I refused to eat spinach because it made my mouth hurt and it would break out in canker type sores. No idea why. I can now eat it if it’s cooked to death , like in a veggie lasagna but, duh, no point. I refuse to eat raw spinach in salads and I always ask restaurants if they use it in their salads.
I first thought it was oxalic acid but I can eat Swiss chard so?
I don’t eat rhubarb in any form, it does the same thing to me.

REPLY
1 reply
Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 8 1:20pm
In reply to @wisco50 "@sueinmn When I was a kid I refused to eat spinach because it made my mouth..." + (show)
Profile picture for wisco50 @wisco50

@sueinmn
When I was a kid I refused to eat spinach because it made my mouth hurt and it would break out in canker type sores. No idea why. I can now eat it if it’s cooked to death , like in a veggie lasagna but, duh, no point. I refuse to eat raw spinach in salads and I always ask restaurants if they use it in their salads.
I first thought it was oxalic acid but I can eat Swiss chard so?
I don’t eat rhubarb in any form, it does the same thing to me.

Jump to this post

@wisco50 In many ways, our bodies are a mystery. It may be quantity of the oxalic acid, or how it interacts with other nutrients or foods eaten at the same time, or even how it is bound in the fiber. For me, I can eat strawberry rhubarb pie or sauce, but I can't eat plain rhubarb pie. Go figure!

REPLY
Profile picture for zinnia55
zinnia55 | @zinnia55 | Feb 9 9:54am

OH and PS the flu syptoms I had these last few days right when I titrated up to 2 mg- turned out to be a nasty head cold! Good news is no flares so far. Take care humans.

REPLY
Profile picture for sundaygolfer
sundaygolfer | @sundaygolfer | Feb 9 11:24am

I was treated for Sjogren for years with steroids which has terrible side effects and then 2 years ago my blood panel revealed I do Not have Sjogren. But when I no longer took steroids the sores continued. My close friend, retired pharmacist, said is a lack of vitamin B1. At her direction I took 1000 mg for a week and sores are gone. I do continue to take 500 mg B1 everyday and have remained clear of mouth & throat sores. Suggest make appointment with dietitian.

REPLY
Profile picture for charly831
charly831 | @charly831 | Feb 15 3:16am
In reply to @judithelizabeth "I e had horrible canker sores for decades. I finally tried L Lysine, 500-1000mg daily and..." + (show)
Profile picture for judithelizabeth @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.

Jump to this post

@judithelizabeth

I get mouth sores and angular cheilitis ( sores at corner of lips) with my PV - hematologist recommend taking L-Lysine daily . For the last year I have taken 1000mg daily and find that it really helps- very few mouth sore now.

L-Lysine ( an essential amino acid crucial for human health, serving as a building block for protein, collagen synthesis, and calcium absorption- supports immune function) .

REPLY
Please sign in or register to post a reply.