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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I just want to add my experience as a caution. I had years of difficult to diagnose autoimmune disease of my entire GI tract, including all the symptoms of Sjogren’s.
I was finally treated with immunosuppressive drug and healed.
However, my front teeth became almost see through due to the lack of saliva- I had used everything available to keep the mouth moist.
I ended up getting several crowns on the affected teeth.

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@artist01

@loribmt, @ktgirl, @kenyalama I forgot to mention, I use Desert Essence Coconut Oil Mouthwash and/or Desert Essence Coconut Oil Dual Phase Pulling Rinse. Both are alcohol free and sugar free. I find them cooling, soothing and refreshing. I don't think in Canada we can get your recommendation of Spry Xclear, Lori.
And of COURSE, I'm also fighting dry eye syndrome, to the extent that glaucoma is now the result. With my vision loss in one eye due to GCA, my other eye is very precious to me! My specialist advised my using Systane 4 times a day and Monoprost gel at bedtime, 10 minutes before the bedtime Systane so that the Monoprost has time for my eyes to absorb it.
In March, I had laser surgery to hopefully help this condition by lowering the eye pressure causing the glaucoma (Selective Laser Trabeculoplasty) but, for me, it was unsuccessful. The promise for success was only about 50% but I was hopeful I'd be one of the lucky ones. My specialist checks the pressure every 3 months. I think I'll try the Systane gel at bedtime too, Lori. Anything, anything that might help!
I'm finally upgraded from wretched to merely miserable following my recent heart attack and ongoing BMS! No more wheelchair. Just my trusty walker and an escort, and pretty soon, I'll fire the escort (giggle) and be walking outdoors again. Yaay!

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Thank you all for the great feedback. I use Restasis for my eyes which doesn't seem to help a lot. I would like to go to a dermatologist however the last time I check it would be a year before I could get in to see one. It is so good to hear from someone about this.

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@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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@ktgirl

Thank you all for the great feedback. I use Restasis for my eyes which doesn't seem to help a lot. I would like to go to a dermatologist however the last time I check it would be a year before I could get in to see one. It is so good to hear from someone about this.

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Ok this may be a long shot and may not be helpful for you at all, but I thought I would pass this along...my mom has had several strokes and is on several medications with side effects such as dry eyes and other irritating conditions. Now, she is a very skeptical person, not buying into every "wacky" health trend that comes her way, but she has found a lot of positive help from acupuncture. The person who treats her deals with many stroke patients and is familiar with their care. Anyway. maybe it could help you and your conditions : )

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Thanks. Definitely worth checking out.

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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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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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@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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You are right. I'm going to research some dermatologists in my area. Otherwise, maybe I could check Mayo Clinic's staff and see how long a wait is there. Where I checked before was in St. Cloud MN and my rheumatologist said the dermatologists there only work part time. Thought that was kind of strange. Anyway thanks for the push to make the appointment. I'm going to do it.

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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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@ktgirl

You are right. I'm going to research some dermatologists in my area. Otherwise, maybe I could check Mayo Clinic's staff and see how long a wait is there. Where I checked before was in St. Cloud MN and my rheumatologist said the dermatologists there only work part time. Thought that was kind of strange. Anyway thanks for the push to make the appointment. I'm going to do it.

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@ktgirl. Hey kt! I'm so proud of you! Way to go! I'm hoping you get right down to business today and make that appointment! Just do it! Lol. Good luck.

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