I am a SCC tongue cancer survivor since 2007 with many biopsies since due to ulcers on my tongue that my ENT is very concerned about. I am also, not to mention the misery of all this. I have been diagnosed with sjogrens and treated for almost a year by a rheumatologist with nothing working for it. Now I have been diagnosed with lichen planus of my tongue and also inside of both cheeks. Then now have me on a chemo pill to try and clear it up but it has been 2 months and no improvement yet. I am being told that probably not even anyone at Mayo clinic has seen a patient with all 3 issues. Has anyone out there had all three things. I am about to give up on anyone figuring this mess out before it all turns to cancer. Can anyone offer any suggestions?

Im sorry to read of all your post OC problems. I did a quick search using the word Sjogrens and found several posts with other members having this. Im not sure about these members also having lichen planus as well. Here is some info about that from the main OCF pages....

Lichen planus

The premalignant or malignant potential of lichen planus is in dispute. Some believe that the occasional epithelial dysplasia or carcinoma found in patients with this relatively common lesion may be either coincidental or evidence that the initial diagnosis of lichen planus was erroneous.(4) It is frequently difficult to differentiate lichen planus from epithelial dysplasia; one study found that 24% of oral lichen planus cases had 5 of the 12 World Health Organization (WHO) diagnostic criteria for epithelial dysplasia, and only 6% had no histologic features suggestive of that disorder. (5) However, Oral Cancer Background Papers as many reports on lichen planus patients followed over time indicate a higher than expected rate of malignant transformation,(6) it is prudent practice to biopsy the lesion at the initial visit to confirm the diagnosis and to monitor it thereafter for clinical changes suggesting a premalignant or malignant change.
- See more at: http://www.oralcancerfoundation.org/cdc/cdc_chapter4.php#sthash.41c5hPtY.dpuf

Hi. I'll add my 2 cents worth although it doesn't cover your query. First of all, commiserations. You are going through a painful and frustrating time. Years before I was diagnosed with oral cancer I had ongoing mouth inflammation, candida and lichen planus. The lacy white lichen planus lasted for a little while but then settled into one ulcerated tongue lesion that then turned into cancer after years of pain. In the end that lesion might not have been lichen planus at all.

During my "lichen planus" years, I got so frustrated that I searched for people online who did research into the condition. I found one at an NZ dental school and emailed him. He told me to get myself to an oral health specialist. The point of this story is that no one could help me. I'd seen an oral surgeon and a dermatologist, my GP, my dentist. I had my mercury fillings out after an allergy test. The only thing that helped was a dose of steroids. Okay, my lesion was probably more cancer than lichen planus but they all thought it was lichen planus and they could help me get rid of it. This was prior to 2007.

If I were in your shoes I think I would do what I did back then. Conduct my own research, see if anyone anywhere has found a way to limit the lichen planus. I don't think that widespread lichen planus turns to cancer. I think its just the ulcerative lesions that are a worry.

Best wishes.

Thanks for your reply. I have had biopies that came back sjogrens and then 6 months later and no healing from various steroids, they biopsied again and it showed lichen planus. Just had allergy testing and nothing there so its not my fillings. The allergist says I'll probably never know what is causing the ulcers, just have to concentrate on healing them, but 18 months and several different drs, no results. Don't know where to turn next. Very frustrated, just hope I can keep it all from turning to cancer again. Can't afford to loose another 1/3 of my tongue again. Good luck to you.