1. < Autoimmune Diseases

Mouth irritation and sensitivity with autoimmune diseases

Posted by ktgirl @ktgirl, Aug 16, 2021

I'm wondering if anyone else has a sensitivity to anything like fruit or even potatoes. I have Sjögren's syndrome and RA and scleroderma. The inside of my lips are very sore and my mouth is extremely dry. I use oracoat lozenges at night and sip water all day. I also have zyligel by Oracoat. My dentist gave me some packets of a rinse called rincinol. Any other suggestions? I can't eat anything that is hard or crunchy like crackers or chips. It's hard to find anything that I can eat.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 19, 2021
In reply to @dianecostella "I have terrible dry mouth due to small fiber neuropathy. I always feel like there is..." + (show)
@dianecostella

I have terrible dry mouth due to small fiber neuropathy. I always feel like there is a film on my teeth. I brush them 3x daily. My tongue feels like sand paper at times.

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@dianecostella what treatment are you doing to protect your mouth since it’s so dry? I’m not sure if you saw this comment from an earlier post.
https://connect.mayoclinic.org/comment/627287/
Do you use artificial saliva?

REPLY
artist01 | @artist01 | Aug 19, 2021
In reply to @macto "I've had pain on my tongue at times and found its from the toothpaste I use,..." + (show)
@macto

I've had pain on my tongue at times and found its from the toothpaste I use, much better since I rinse my mouth real good after brushing and using less toothpaste.

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@macto Hi. Did you know there are more natural toothpastes available that don't contain the harmful parabens, artificial sweetners and dyes, preservatives, or the dreaded SLS (I think it's called laureate sulphate)? Most regular toothpastes contain all of the above. In Canada, I use Arm & Hammer brand, which is also fluoride free and is a natural whitener. I hope you can find something similar where you live. Good luck! Laurie

REPLY
ktgirl | @ktgirl | Aug 19, 2021
In reply to @artist01 "@ktgirl. HI kt. Think of it this way, if you make that appointment with the dermatologist..." + (show)
@artist01

@ktgirl. HI kt. Think of it this way, if you make that appointment with the dermatologist and have to wait a year, imagine how much longer you'll be waiting if you DON'T make the appointment! And you might try explaining your present painful predicament to see if they might put you on their cancellation list. That's what happened in my case, and they got me in within only six weeks. Make that appointment, kt!! You have to be your own best advocate. Do it!! Good luck.
My best to you, Laurie.

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I've been checking on dermatologists and the only one at Mayo Clinic that lists oral lichen planus as a specialty has terrible ratings. Only 3 reviews. Guess I'll keep looking!

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1 reply
artist01 | @artist01 | Aug 19, 2021
In reply to @ktgirl "I've been checking on dermatologists and the only one at Mayo Clinic that lists oral lichen..." + (show)
@ktgirl

I've been checking on dermatologists and the only one at Mayo Clinic that lists oral lichen planus as a specialty has terrible ratings. Only 3 reviews. Guess I'll keep looking!

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@ktgirl. HI kt. Bad luck with your Mayo Clinic search, but don't give up. There's a dermatologist out there, waiting for you!

REPLY
marye2 | @marye2 | Aug 19, 2021
In reply to @athenalee "I have Sjogren’s, and on and off battles with oral thrush, lots of teeth problems, and..." + (show)
@athenalee

I have Sjogren’s, and on and off battles with oral thrush, lots of teeth problems, and sore throats. I brush my teeth three times/day with natural fluoride toothpaste. Periodically during the day, I gargle with Jason’s no sugar/no alcohol mouthwash, with one drop of oil of oregano. Alcohol is drying, so good to avoid. Oil of oregano, in a nonalcoholic tincture, is an antifungal/antibacterial that has helped immensely to manage my oral thrush outbreaks. I eat no refined sugar. And, I find it very helpful to drink a lot of water all day long, swishing it first. It helps to keep my mouth moist and my kidneys healthy against damage from all my meds.

I use a warm cloth on my eyes to soothe them.

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Dentist told me that bacteria is most of the problem with dry mouth. Suggested using ACT with xylitol, which kills bacteria. I found an OralB brand that I liked as far as ingredients (No alcohol) and it is good. I also use waterpik. I brush 2X a day, just once with toothpaste. I've used Miracle Mouthwash for mouth sores- it is a prescription.

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1 reply
marye2 | @marye2 | Aug 19, 2021
In reply to @macto "I've had pain on my tongue at times and found its from the toothpaste I use,..." + (show)
@macto

I've had pain on my tongue at times and found its from the toothpaste I use, much better since I rinse my mouth real good after brushing and using less toothpaste.

Jump to this post

Stearate is apparently the ingredient that is "offending". Rembrants used to be the go-to but I don't know which one does not have it these days.

REPLY
marye2 | @marye2 | Aug 19, 2021

Ask your Dr to prescribe Miracle Mouthwash, which will take care of the soreness in your mouth. Potatoes are one of the foods that autoimmune often have an intolerance to as it is a nightshade. However, it is likely you need the MM to eliminate the basic issue. Try xylitol lozenges or Bentene spray to help hydrate your mouth.

REPLY
dianecostella | @dianecostella | Aug 19, 2021
In reply to @dianecostella "I have terrible dry mouth due to small fiber neuropathy. I always feel like there is..." + (show)
@dianecostella

I have terrible dry mouth due to small fiber neuropathy. I always feel like there is a film on my teeth. I brush them 3x daily. My tongue feels like sand paper at times.

Jump to this post

I never heard of artificial saliva. I do nothing but live with it. My eyes are another story. I use Cequa prescription drops expensive but worth it.

REPLY
1 reply
athenalee | @athenalee | Aug 19, 2021
In reply to @marye2 "Dentist told me that bacteria is most of the problem with dry mouth. Suggested using ACT..." + (show)
@marye2

Dentist told me that bacteria is most of the problem with dry mouth. Suggested using ACT with xylitol, which kills bacteria. I found an OralB brand that I liked as far as ingredients (No alcohol) and it is good. I also use waterpik. I brush 2X a day, just once with toothpaste. I've used Miracle Mouthwash for mouth sores- it is a prescription.

Jump to this post

I do brush with Act, no alcohol/xylitol too…kind of a yucky taste for me though. And, you’re right about the bacteria. I’ll check out the Oral B, maybe it tastes better! And, I’ll ask my doctor about Miracle Mouthwash, it’s got quite the combo of ingredients. I won’t waste my time on nystatin again, it doesn’t work for me and is loaded with sugar. Thanks!

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 21, 2021
In reply to @dianecostella "I never heard of artificial saliva. I do nothing but live with it. My eyes are..." + (show)
@dianecostella

I never heard of artificial saliva. I do nothing but live with it. My eyes are another story. I use Cequa prescription drops expensive but worth it.

Jump to this post

I think you can get it at any drug store. My sister used to use it

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