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Behçet's UK
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Roof of mouth

Hi. I was wondering if anyone has had a roof of mouth that is extremely painful. It feel like it’s blistered from a burn but I can’t see any obvious signs of ulcers. I have other ulcers in my mouth right now, but palate feels like someone has beaten it over and over and then set on fire. Eating is out of question and swallowing is very difficult. TIA

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My first time having an excruciating pain over the entire surface of the inside of my mouth my doctor could only see two small canker sores. But the pain was excruciating and it was throughout my mouth. At times when I floss my teeth, my gums bleed and get swollen and huge and I didn’t see any canker sores those times.

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Yes I get that too. I think you can get a pre ulcer state, caused by our vasculitis, prof fortune mentioned something like this, and I have assumed that this is what it is

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Hi there, yes I have experienced this too. You have to be really careful what you eat when the top of your mouth is like this. Only soft foods that aren't too hot or to cold. I got this when I was on heavy pain meds, I believe I couldn't really feel the irritation I was causing whilst eating the wrong foods. The top of mouth also goes a dark purple when it gets like this. Hopefully it clears up soon!

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I think mine is there because I’ve been taking Otezla. In addition to severe diarrhea, I also had to go the ER for migraine and dehydration. I think my body is telling me it’s not right for me. Next med, I guess....

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I know what you mean. The pain wakes me up out of sound sleep. I’ve had Behcet’s for thirty years and have never had my mouth hurt so bad. It’s like someone burned and then beat it.

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Hi Lovingdragonflies

I have been having quite a lot of issues recently with the roof of my mouth as well as swelling I have experienced symptoms such as you describe, at my appointment with a oral and maxillio facial consultant on Monday this week, which was next to pointless because he was not prepared to do anything as I'm under rheumatologist for Behcet's, anyway when I mentioned these other symptoms in the roof of my mouth he said many postmenopausal women experience this with no real answer as to why, I was taken aback and questioned this but he offered no further explanations or treatment...

Since then I have picked myself up from being sorely disappointed from this appointment and decided to try taking half a antihistamine (5mg) once a day at night and I have been amazed by the reduced feelings in my mouth, this is the only medication I have taken, I am trying this for 5 days and stopping to see what happens, last night tonight, I have nothing to lose by giving this a try :-) I had been reading bits and pieces about how antihistamines can help in some Behcet's people.

Hope you get some relief soon.

Gillian

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That’s great input. I used magic mouthwash yesterday but I only have a little bit left. That will tide me over. Last night before sleep I used a chloraceptic drop to help deaden it. That helped too. I know it’s from Behcet’s. Everything is haywire for me right now. My scalp is covered with lesions. My legs have had them. I’m in a constant flare, but this is an increase to the flare...

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Hi gillianTS

I totally get the 'disappointed' feeling, and great that you decided to be pro-active with regards to finding your own way to try and ease the pain of ulcers and swelling.

I have had the roof swelling for some time, along with many other oral manifestations and bodily symptoms. Strangely enough, before being examined by maxillo-facial /oral medicine consultant, I too was told it was part of the menopause. That said, I am well past the 'sell-by-date' on that one! I had a total hysterectomy 20 years ago! I also take an anti-histamine, prescribed by immunologist (initially thought my mouth ulcers were some form of allergy related problem) Apparently, bloods indicated not! I still need convincing on that one! He mentioned that I obviously have' skin fragilty' in the oral cavity and therefore prescribed me Fexofenadine 120mg tabs -1 per day. They do seem to have eased the symptoms slightly. Although, I still have the puffiness from time to time, and it does seem to coincide with mealtimes - reaction - not as severe prior to antihistamines. Who knows? I suppose , much like you mentioned, some medications work for some and not for others. I am interested to hear if the antihistamines have made a difference yet?

Sue.x

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Hi Sue

Thought I would send a little update on the antihistamines and then stopping, as you may recall I decided to take for 5 days half a 10mg tablet I found the results really interesting and felt my mouth and face had interestingly improved in calming down. Now I've not taken them since and my mouth has slowly started to get worse and the roof of my mouth has swollen up again and having the pressure in my my nose, sinus, eyes and head has returned, it is now thought that one area of my mouth, top rear left, where I have a root filling is infected, pus coming out, and yet I have and do get swelling in other areas of the top palate and other areas of my mouth which the dentist says are not related to the infected site and he's as puzzled, so I have been given a course of antibiotics for 5 days, I will see if these have the same relief on the pressure in my face as the antihistamines. Incidentally I also get teeth chattering, long standing, when I'm relaxed in bed its not massive but this too has got noticibly worse over the last few days, I intend closely monitoring my symptoms carefully over the 5 day course of antibiotics and then 6 days later I see the, new to me, rheumatologist who apparently has a special interest in Behcet's.

Thanks for your interest. Gillian x

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Hi Gillian.

Yes, quite interesting that the antihistamines had some effect on your mouth integrity and when no longer using, the symptoms returned!

Seems to be some allergy connection -perhaps? Also, with reference to the sinus pressure , stuffy nose , headache you experience - I get that too and it seems more prevalent after eating. Just wondering if there appears to be a pattern with yourself too?

Sorry to hear about the infected root filling. Ouch! Sounds grim. Hoping the antibiotics have helped ease that somewhat? 👍🏼

Teeth chattering - Yes! I have something similar to that too and a trembling tongue intermittently . In fact, there are many parts of me that fizz and buzz it’s a wonder I don’t self destruct some days! Peculiar disease/syndrome this Behcet’s - and every day there appears to be something lurking in the wings ready to make its not - so - grand entrance.

Interested once again, to hear what the rheumatologist has to say on your next appt regarding the above.

Take care now.

Sue x

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Yes I have had the same. The only thing I can recommend is the same treatment you would use for mouth ulcers - but nothing anti-inflammatory. Hope it heals soon.

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Thanks!!!!

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I don’t know if this is the same thing, but supposedly, it is from Behcets. (There is a slight chance it could be from lupus, who knows.) It started with swelling in the roof of my mouth and it was so painful, like it was radiating up into my head. Then, all of a sudden an ulcer started eating away in the center and I could stick my finger up inside of this big hole! Not soon enough, the skin died and would hang down and I would cut it with scissors! Sorry, this sounds so gross, I know and it was awful! Eventually it healed back together, but I used to get ulcers so bad, my uncle who was a ear nose and throat specialist, would have to cauterize them. I didn’t know then what exactly it was, because it was a little different than what I was used to with lupus and this was before I was diagnosed with Behcets. The doctor that I saw at the urgent care, just about jumped back and ran out of the room when he saw my mouth, he had never seen anything like that before!Oh, there really wasn’t much treatment that I got, because I didn’t have insurance then and they didn’t know what it was! I was going to post a picture but I guess I’m not able to? I will try!

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Hi Lovingdragonflies

Sorry about the late response. And also sorry to hear your mouth is causing you trouble. It seems many of us with Bechet's differ with the severity of the oral manifestations of this not so wondrous syndrome/disease. My mouth sometimes tingles at the slightest bit of irritation, but can also produce huge ulcers without any provocation. I am sure having Behcet's makes us more sensitive to developing other sensations in the mouth besides the pain from ulcers. I am on a trial of oral steroids for the next three months, and up to now, the ulcers have not made an appearance, the other symptoms are continuing but, with less severity. Still have puffy gums, but also less severe. Roof of mouth with strange, burning sensation also less severe. No skin peeling so far, but this was further aggravated by eating fruits in their raw state so no longer able to tolerate them, sadly.

I take 'Fexofenadine' antihistamines to help with some of the reactions to what I believe is a hypersensitivity response to an allergen. Apparently not so, it seems! My GP told me it was part of BMS (BurningMouth Syndrome) and common in post menopausal women. GillianTS had a similar conversation with her consultant - all to no avail. It is a long and drawn out road to finding the answers and relief we so long for. And, when one symptom is seemingly under control, another one shows up ....joyous! Or perhaps not!

I am hoping your mouth irritation has manged to subside and that you are able to eat a little something now?

Sue. x

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My mouth is better. I’ve been on Otezla and it’s like my whole body is revolting. I ended up in ER with migraine that wouldn’t respond to medication, also severe diarrhea and dehydration. I’m off Otezla now, but not sure where I’ll go from here. I’m still very weak and not doing so hot. Just a bad flare within a flare.

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