Unexplained Mouth pain

[Kahina]

Hi I have lupus and sjögrens syndrome and have had pain in my mouth located in my gums for more than 7 months now.

My dentist first suspected that it was some kind of chronic gingivitis and that it was a side effect of my medication Benlysta, which I paused. However, since then the symtoms are getting worse. My Symptoms are a burning and scathing feeling, gums that are getting more tender, red and swollen gums. What started in the gums at two places have now spread to the whole mouth. Due to this and the pain I'm having problem to eat and sleep, which has been going on for months.The dentists and rheumatologist didn't find any connection to my lupus, no sign of inflammation, virus, candida or bacteria that's causing it. And now one dentist diagnosed it as a tentative Burning mouth syndrome. Has someone of you experienced something similar, and if so what can one do to treat it and deal with it? And can the mouth pain be linked to SLE and Sjogren's syndrom that doesn't manifest itself in the blood test results?

Thanks in advance for your answer dear lupus family!

Kahina

[svfarmer]

So sorry your going through this, I no how painful it is as my mum gets it - she’s 75 and has suffered with it for years on and off, hers is definitely linked to stress- she got some relief when she went on anti anxiety medication x

[Blondiejayjay]

Hi I have something called Oral Lichen Planus which is thought to be an autoimmune response, mine was diagnosed visually and confirmed by biopsy. For some it comes and goes but for me it’s always there and is more painful depending on irritants. google.co.uk/search?q=oral+...

Hopefully the link works worth considering as symptoms are similar

Hope you get some relief soon.

[janetfmauk in reply to Blondiejayjay]

I too have Oral Lichen Planus that does not go away. Because I also have soreness on my lips I was referred to a Dermatologist who prescribed Acertretin ( have to have fasting blood tests about 10 weeks apart due to possible side effects). I have been on Acertretin for over a year now and the pain and soreness has been held in check for the most part. I have to use Tacrolimus ointment on my lips otherwise they flare up again.

[Hidden in reply to Blondiejayjay]

I had oral lichen planus for about five years, then found it was an allergy to yogurt. I stopped eating it and haven’t had it since. It was quite inflamed for so long, then like magic gone. After five years, I can now eat yogurt occasionally

[MrsMouseSJ]

I had a very unpleasant oral experience myself late autumn last year. Like you, there was no clearly identifiable cause and I was told it was likely to be burning mouth syndrome - I was referred to the dental hospital.

In my case, I had really painful patches on my tongue - which weren't swollen but there was a change in the appearance of the surface of the affected parts of the tongue (a red slight ring around a slightly differently coloured sore patch); plus pain on the inner, lower lip. I was also incredibly thirsty. Waxed and waned for weeks, making eating a real challenge, then - suddenly - just went. No one did bloods for me, but I had no other symptoms suggestive of a Lupus flare, etc.

I hope your own symptoms will clear soon.

[Furryfriend]

Hi Kahina , I also have Lupus and sjogrens , and i suffer greatly with blisters and abscesses in my mouth and gums , I take Folic acid for these and for the most part it does help . I take Hydroxychloroquinne and Methotrexate and my consultant warned me that this medication would cause these problems . Prednisolone can also help .