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 have the sane problem. The last few days my lips and mouth and eyes are soo dry
I use Systaine for my eyes, they feel sandy. I apply eye drops continuously and I keep applying lip balm. Be aware of your guns.
So sorry not too much else to do.
I have Biotene to rinse with. Does not help at all.
Take care and don’t give up!

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I forgot : I get mouth sores in the tongue and lips all the time too

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@ktgirl, @kenyalama. Have you been checked out for oral lichen planus? A dermatologist or dentist is your best bet to get a diagnosis for that. I was diagnosed last December., 2020, and have been battling it ever since. It's an autoimmune disease involving painful lesions on tongue and inner lips. It's not contagious, which is a blessing. I've had 5 or 6 doctors prescribe all manner of medications until I attended at a dermatologist's office. He said Clobetasol was his first line of defence, and advised me to apply it sparingly to lesions four times a day. When that was ineffective, he upped it to six times a day, with no positive result. Finally, he prescribed using Protopic (tacrolimus ointment 0.1%) sparingly on the lesions four times a day, as well as strongly advising me to carefully watch my diet for triggers. No citrus fruit or juices, no raw vegetables, no sweets, no crackers or similar foods that can hurt your mouth. I also cut out gluten and lactose at that time, to help my IBS (another autoimmune). I have Giant Cell Arteritis ( yep, another autoimmune), as well as several other autoimmune varieties.
And glory be, I'm finally pain-free from the oral lichen planus and the lesions are slowly going away! I'm still very careful to follow my diet restrictions so as not to trigger things, but that's a small tradeoff to be pain-free at last. I use White Petroleum Jelly USP Ointment for my dry lips. Good luck in your quest for a solution. Hope this helps.
Laurie

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@artist01

@ktgirl, @kenyalama. Have you been checked out for oral lichen planus? A dermatologist or dentist is your best bet to get a diagnosis for that. I was diagnosed last December., 2020, and have been battling it ever since. It's an autoimmune disease involving painful lesions on tongue and inner lips. It's not contagious, which is a blessing. I've had 5 or 6 doctors prescribe all manner of medications until I attended at a dermatologist's office. He said Clobetasol was his first line of defence, and advised me to apply it sparingly to lesions four times a day. When that was ineffective, he upped it to six times a day, with no positive result. Finally, he prescribed using Protopic (tacrolimus ointment 0.1%) sparingly on the lesions four times a day, as well as strongly advising me to carefully watch my diet for triggers. No citrus fruit or juices, no raw vegetables, no sweets, no crackers or similar foods that can hurt your mouth. I also cut out gluten and lactose at that time, to help my IBS (another autoimmune). I have Giant Cell Arteritis ( yep, another autoimmune), as well as several other autoimmune varieties.
And glory be, I'm finally pain-free from the oral lichen planus and the lesions are slowly going away! I'm still very careful to follow my diet restrictions so as not to trigger things, but that's a small tradeoff to be pain-free at last. I use White Petroleum Jelly USP Ointment for my dry lips. Good luck in your quest for a solution. Hope this helps.
Laurie

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@artist01 @ktgirl @kenyalama Mouth sores are just awful. I swear they set the tone for the rest of the body. Laurie, your thoughts on Oral Lichen Planus is really interesting and very well could be the culprit for kt and kenya. Thank you for sharing your story and hopefully this puts them on the path to another avenue of treatment and healing!

I was just going to toss in that during all my chemo and hoopla with the transplant, my mouth underwent extreme changes but it was brought on by medications so it’s back to normal now. Though I do have times of irritation from acidic foods or too salty items such as potato chips.
What got me through some of my worst times, and now I use it because it’s soothing…Spry Xlear mouth rinse. It’s non alcoholic and contains xylitol which helps to naturally heal and calm the tissue. It’s not a cure all but it is very gentle. When I was going through my treatments it was approved for use by my Mayo Clinic pharmacist so I feel comfortable in sharing the name of it here.

@kenyalama I share your misery with dry eyes. You might like to try another product by Systane. It’s Systane Nightime lubricant. It comes in a little tube and you apply about 1/4 of an inch in the bottom lid of each eye before bed. Your sight gets blurry so just turn off the light and go to sleep. But wow, that’s been a huge life saver. It needs to be done nightly for the best outcome. I used it sporadically at first and felt no change. But once I started applying it on a regular basis i find I don’t even need drops during the day anymore.

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@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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I am truly sorry for your troubles !
Mine are not that awful but I have other aggravations: relentless trigeminal neurakgia ( I have a pain pymp ( for that) and too many other neurological painful conditions
Too many to mention
Letting you go now. I am typing with finger nail due to painful neuropathy in finger tips
Let’s try an optimistic way: I am thinking about my grandkids, music , nature meditation
Takes me away fir a few minutes a day ( or not )
Trying trying

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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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Thanks for all that great information Laurie! And yippeee skipppeeee for the upgrade from wretched to merely miserable! As much as I love that word wretched, because it’s so descriptive, having a friend using in context with how she’s feeling makes me feel wretched. 😘

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@loribmt Never do I want a friend of mine to feel wretched because of my descriptive word choices! I will strive to maintain a level of optimum health so that I only use nicely descriptive words from here on! ( but I may have to resort to private messaging if worse comes to worse at times… 🤣) Hugs from Laurie X0

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@artist01

@loribmt Never do I want a friend of mine to feel wretched because of my descriptive word choices! I will strive to maintain a level of optimum health so that I only use nicely descriptive words from here on! ( but I may have to resort to private messaging if worse comes to worse at times… 🤣) Hugs from Laurie X0

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😂😂 Any time, my dear!! Any time. 😘

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@loribmt

😂😂 Any time, my dear!! Any time. 😘

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@loribmt. 😊

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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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