Sore tongue and Behçets disease: Hello I was... - Behçet's UK

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Sore tongue and Behçets disease

Sara0209 profile image


I was diagnosed with behcets 2 years ago and after my initial 3 months of symptoms I have not had any for nearly two years. I think I am currently in a flare-up phase but do not have mouth ulcers although my tongue is extremely sore, also have muscle ache, fatigue, poor vision, joint ache, tingly skin, pins and needles in my face and headaches. Has anyone else experience sore tongue instead of mouth ulcers, although did have two mouth ulcers two weeks ago. I have an appointment due with my consultant next month and will go get bloods done tomorrow.

Thank you for your help,


6 Replies

Hi Sara0209 sounds like a flare. Look after yourself,get enough &avoid stress

Hi Sara

I am so sorry about all your symptoms. Have you found anything to help give you comfort?

Oh yes... haha the sore tongue. Sores on the tongue amd the deep grove down the center amd everything tastes god awfle bitter. 1. I brush 3 plus times a day 2. Rinse with ACT restore or the dentit provide a sorcicle rinse for ulcers 3. If the ukcers get to too bad ther is also an ointment the dentist can provide as well. 4. Sticking with the low inflammation diet/ no sugar and lots of water will help.

I hope this helps. Keep us oosted on hoe you are. Hope you start to feel better.



Before all my ulcers appeared I would get a sore tongue it also felt swollen. Mainly on the sides it felt rough if that makes sense. I now use a natural toothpaste which is 100% natural Greenpeople Organic Lifestyle have been using for over a year. No ulcers or soreness. With regards to muscle joint ache I was very deficient in vitamin D my readings were very low. I would ask to be tested. I now take supplement daily joint/ bone pain all gone. I also take a vegetarian flax/linseed oil tablet daily this helps my inflammation considerably. I find certain teas give me pins and needles in my face and also a numbness. This has just started again as I stopped drinking tea for ages found another brand that I didn’t get this with but now all change again. I would keep a diary of things you eat and drink as this could be the cause. Hope this helps. All the best

Hi Sara

Sounds just like the kind of way my flares start up, the sore tongue I have this too almost all of the time at the moment, if I look closely enough it is speckled with dark pinky/red dots all over this usually spreads to the roof of my mouth its as though I have been eating really hot soup, I have the bitter taste, I also get a swollen tongue during flares if I look down each side I can see the indentations from the inside of my teeth which get much more pronounced. I was also eventually diagnosed by oral and maxillofacial consultant with was teeth clenching (not grinding) this affected my face, head, jaw and ears which created horrendous head and face ache I just did not know what to do with myself I eventually fitted for a mouth splint which has helped greatly.

I have removed all refined carbohydrates out of my diet over the last 10 months which I feel has helped but it certainly has not eliminated my flares completely, I was initially on colchicine which I had an allergic reaction to and then on prednisolone which I have been on 5 months and I felt an initial feeling of being much better but now I am wondering why I am taking it.

Hope you get some relief soon.


I get very sore, swollen bumps on the side of my tongue. It's just on the one side, and often my eye on that side feels swollen and teary, my ear hurts and I also get bumps on my scalp and temple. They are like sores but they only occasionally break open into ulcers. I feel very tired and headachey when it occurs.

My tongue has now been on fire for months - I am not diagnosed with anything so far other than Sicca Syndrome, but my teeth are rotting and I get recurrent ulcers on the sides of my tongue and all over after any dental treatment (last few months she has been filling teeth nearly ever 2 weeks) Am awaiting another lip biopsy ref Sjogrens, but no-one has ever mentioned Bechets before, so I will next time! Bicarbonate of Soda in water helps cool things down a bit as does warmed up frozen yoghurt! lol x

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