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Behçet's UK
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Any ideas

Any ideas

Hi,

I was wondering if anyone could tell me if this looks like a canker sore, have suffered with severe ulcers up until now

This is a new one on me and was wondering if the magic mouthwash works on canker sores aswell as ulcers, the whole side of mouth and throat is inflamed and eating is difficult and painful

Any ideas welcome

Cheers kev

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Hiya might be worth getting it biopsied , I’ve got behcets and also diagnosed with erosive lichen planus which can leave my mouth in a proper state . Being on azathioprine has helped control both conditions also using a steroid paste from consultant helps . Good luck finding an answer hope this has helped 😊

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Thanks for reply Funhound

Been like this for 3 days now, over Gps on Monday for bloods, will try and get an appointment..

I'm taking 2 x daily Colchicine which has eased ulcers.....im on MTX injections, and off Humira for a while as i need surgery on a Hernia

Will have to find out if the magic mouthwash could help

Thanks kev

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Hi swanseakev.

Something else to throw into the glorious mix, uh?

I had these on my tongue alongside the horrendous canker sores and craters. The oral-maxillofacial consultant I saw thought it was perhaps all related to the Behcets - and so it goes. It seems I have 'fragility of the oral mucosa' Wry smile here! This was the immunologists diagnosis after ruling out allergies! And, strangely enough, I am intolerant to certain foods, especially fresh fruit and raw veggies. Skin sores, puffy gums and swollen tongue, skin peeling in shreds ,feeling as if my mouth had been burnt with hot food. All would occur after ingesting them. Had to stop. The joy!

You haven't by any chance eaten something a little different, or had a change of medication?

The comment from Funhound is interesting too, as not something I have heard of - 'Erosive Lichen Planus' but the sores I had, and still sometimes have are very similar to the one in your mouth.

Up to now, Prednisolone, and Fexofenadine antihistamines appear to be keeping me relatively ulcer free. Other symptoms persist. However, the steroids bring with them other side effects and would love to be rid.

Always good to have it checked over, SK.

Will be interested to see what your GP's thoughts are.

Hoping it doesn't get any worse.

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Hi Minnskimoo,

Thanks for reply, i haven't eaten anything different or out of the ordinary lately.and meds all the same ...thought i had start of ulcer coming again but low and behold something NEW!! (again)

Its the inflammation on that side of mouth and throat which is really hurting

See what Doc has to say Monday ..hopefully

Thanks again

Kev

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I get ulcers all the way down my throat, into the ear canals, and even in my nose. It’s super fun. You could be seeing the start of ulcers given that you stopped the Humira. Like others have mentioned, it could also be something new. I’ve never asked, but honestly I’ll get flare ups were my mouth burns and the whole roof of it will me raw and patchy with red. It’s never dawned on me to ask anyone about it. Usually I just use the magic mouthwash, or I’ll even gargle some sucralfate. Sucralfate I always have on hand, and more than once I’ve taken it for GI ulcers and pain, only to have it coat some places in my throat, too.

Definitely talk with a doctor because there are other things you could do to make yourself comfortable or even prevent this, whether it’s ulcer related or not. I think the key is that you stopped Humira. Without that medication, your body has come up with something to throw at you, which lends me to believe it’s somehow autoimmune in nature. Obviously it could be something random, and unrelated, but that would be an awfully big coincidence.

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Thanks Christina for the reply,

I'm used to the Ulcers in different guises but this has felt and looked different to what I've had before

As you say it could be down again to an Autoimmune disease again , everything else gets this label

Cannot wait to get back on Humira

Thanks again

Kev

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Look into pemphigus vulgaris. It is diagnosed off a biopsy too.

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Thanks Rooser,

Looked it up sounds like it could tie in with everything i got going on

Hopefully seeing GP Monday, definitely seeing nurse ....going to show her and go from there

Have bit the bullet and started the Magic mouthwash, which seems to have started to ease it a little

Cheers

Kev

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That’s the exact same kind of mouth ulcers I get. I was just recently diagnosed with Behçet’s, like within the past two weeks. I’ve been suffering from fibromyalgia since 2007, and since then I’ve had new symptoms pop up that made it so odd. I knew it couldn’t JUST be fibromyalgia. Anyway, keep us posted and let us know what the doctors say.

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Thanks for reply Kekome,

I suffer with a hell of alot of ulcers, this one whatever it is just started off and progressed differently....i can have 6 or 7 ulcers at a time and also the blood blisters which you can just make out 2 in the pic

Touch wood the "Magig Mouthwash" from Rhuemy is helping it greatly , so im guessing its an Ulcer of some sorts

Thanks again

Kev

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This ‘magic mouthwash’ - can you buy it without a prescription? I am undiagnosed as of yet but I get the mouth ulcers but also my tastebuds become inflamed, then go white and burst - they hurt like a son of a female dog....🤬

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Hi Rydel,

I would say the magic mouthwash is Prescription only.

My Rhuemy precribes mine and i get it from Hospital pharmacy, its made up of 3 different Drugs....Buccal tablets(Hydrocortisone), Nystatin, Doxycycline...dilute these 3 in 20ml water and rinse mouth

My Rhuemy has trained at London COE ,so knew all about this mouthwash.

Hope you get some relief soon

Cheers Kev

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Thanks Kev, I actually looked it up online and you can make it on your own as long as you get a script for lidocaine., mix it with children’s benadryl and maalox. In the meantime, I just went and bought some oral wound cleanser from the drug store, so we’ll see how that goes.

Robyn

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Good luck Robyn,

It can take a hell of a time trying different potions and lotions to find something that actually works

I've tried numerous pastes , tablets, mouthwashes

Hope you too find something that helps

Cheers

Kev

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Thanks Kev, I’ve tried the pastes and they were ewww, the rinse from the drug store wasn’t too bad actually - a minty vanilla flavour and so far my mouth feels pretty good. I’m sure the T3’s help a bit 😉

Have a good one, Robyn

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