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Sjogrens causing mouth ulcers

I have had 2 bouts with tongue cancer and the removed one third of my tongue several years ago. Almost 11 months ago I developed a mouth full of ulcers and have seen sent, dentist, periodonist. Nothing has helped.  My primary Dr finally suspected Sjogrens autoimmune disease and had to wait 3. Months to see a rhuemetologist. He had me get a biopsy and diagnosed Sjogrens. He has tried medroland a couple other steroids followed by colcrys which didn't work at all now has me on Imuran and also prednisone 60 mg a day. After 3 weeks of miserable side effects and no improvement in the ulcers, I told them I couldn't see staying on the prednisone. I am weaning off now and starting to feel like I might actually survive, I had terrible mood swings, depressed, fast heart rate, bad headaches, terrible sweating and just a nervous wreck and shaky. Wondering if others had this much trouble with this dose... Just hope that I can have success with the Imuran without so many side effects.Also wondering if anyone out there has experience with Sjogrens. The Dr admits he has never seen Sjogrens cause these severe ulcers inside both cheeks and on my tongue, but he also says he has never had a Sjogrens patient that has had the previous tongue cancer and already have bad probl ms due to loosing saliva glands with the cancer surgery.  Getting desperate and miserable, any thoughts would be greatly appreciated.
2 Responses
1530171 tn?1448129593
Bigtwin58, I'm afraid the prednisone dose was a bit too aggressive (1)
as a starting dose AND also prednisone may have been contra-indicated (2) in the event that one of the following scenarios is present:
a.  classic clinical features of Sjögren syndrome may also be seen in infections with certain viruses.
b.   sjogren's is secondary to another rheumatic disease with an infectious
basis.
Prednisone is immunosuppressive, so any underlying infectious agents,
would likely thrive in the body, so you might have been setting yourself up for a health disaster.

For your mouth ulcers, please look into "Oil Pulling" using extra virgin coconut oil. It just might help.
Saliva is part of your immune system.
At the same time the oral cavity has the perfect environment to host pathogenic organisms and toxins, except now there's less protection, so they're left unchecked.
Oil pulling will rid of most of them, however, it must be done one a daily basis. In your case, perhaps 2 x daily.

By doing this you may also prevent sjogren's complications like  dental cavities and oral thrush and if you use coconut oil in your cooking (instead of other inflammatory cooking oils) or as a supplement, you can prevent yeast infections, another complication of sjogren's.

Hope this helps, however, please note that my comments do not constitute medical advice.

Best,
Niko
Avatar universal
Hi, I am being treated for A-typical Sjorgren's. I used to get horrific mouth sores that felt like they were eating through my cheek along with parotid and salivary glad inflammation. I found all of this greatly improved after I went on Plaquenil about 1 1/2 years ago. I rarely get ulcerations now but when I do I find biosilver spray helps and I have used triamcinalone in an orabase gel that sticks to the ulcers and coats them.

As Niko noted, oil pulling is great, but with 3 small children I can't seem to keep my mouth closed long enough to "pull" it off. Good luck! Sjogren's is wierd and frustrating.
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