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Behçet's UK
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Help me bechet's mouth sores

My mouth hurts so bad... I can't even open it enough to talk. I can't stop getting upset.. Fear that my being upset will worsen it... Please someone put me out of my misery! 😢

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Hi there, I had mouth sores for as long as I can remember so I feel your pain. One thing to get if you don't already have it is lidocaine from your doctor to at least make eating bearable. The other thing that actually helped me to not have to deal with them as commonly as I used to was taking a nutrition drink daily called Zeal. Now I only have to deal with mouth sores or any of the disease issues when I get extremely stressed. I tend to be stressed all the time by nature because I am a very serious and literal person, so when I say extremely stressed I mean it.

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Hi, I use BETAMETHASONE dissolvable tablets that are a mouth wash given to me by the mouth consultant at the Aintree Centre and I now get them on my repeat prescription from my GP. You just dissolve them in a little water, swill the liquid around in your mouth and spit it out. They work best for me if I catch the ulcers when they first start but I use them all the time as soon as the tingle starts and they help me tremendously.

Good luck and take care !

X

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As others have said you need something to numb the pain. In the uk I use difflam mouthwash as it numbs and dissolve soluable pred x2 in 10mls of water. That helps them heal up quicker. I also take pred when required to help stop or bring a flare to a stop.

feel your pain x x

uk you are in the uk? Can you contact your specialist nurse or consultant for advice or a change in meds if required?

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Hi as a sufferer of over 30 years I recommend using a clenil inhaler......a couple of puffs into mouth swill around then let it out, do not swallow.

On aprictical side....eat soft foods cool not hot, dip toast into tea or milk, use a straw, get an electric toothbrush as it has a much smaller head and won't irritate the mouth so much. You must keep hydrated at all costs, most of us find that coca cola has a soothing effect. Finally before sleep put some Vaseline on your lips so that they do not crust up and bleed.

It will get easier.

Billi

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I was advised to start the "triple mouthwash" for Behcet's disease, and use it up to 4 x day when flare is bad:

1. Take the following three ingredients and dissolve in 10ml of water (that's about half an egg cup):

Betamethasone soluble tablet 0.5mg (tiny round pink tablet that dissolves in water)

Doxycycline soluble tablet 100mg (one grey colour tablet to dissolve in water)

Nystatin oral suspension (100,000 units) - measure out just 1 ml of the yellow fluid

2. Rinse this mixture around your mouth and gargle with it for 2 minutes, then spit it out. Do NOT swallow it!

3. Do not eat or drink for one hour after using this mouthwash.

This really does start to work after the first day for me. It contains steroid to reduce inflammation, antibiotic to fight infection and anti-fungal to get rid of any thrush/ candida infection in your mouth.

And for the mouth ulcer extreme PAIN I apply Anbesol liquid to ulcers as that contains anaesthetic lidocaine to numb them for a couple of hours (then i can eat/drink etc) and is antiseptic too.

Also I use another anaesthetic spray that needs to be prescribed by a doctor; Difflam spray (green bottle, 30ml) 4-8 puffs, every 1.5 to 3 hours has a handy arm nozzle so can spray directly at back of throat or wherever the ulcers are cropping up.

Other natural suggestions I have heard include drinking ginger and lemon in warm water like a regular "tea", and a lovely local Indian chemist suggested gargling with a paste of milk and turmeric as that has anti-inflammatory properties. But I have not tried that one yet as so busy doing all the others.

I had a lifetime of mouth ulcers from primary school age upwards so I can feel your pain! For a long time they were kept at bay with low dose oral steroid prednisolone and immunsuppressant azathioprine but recently I entered a flare.

Wishing you all the best getting on top of the pain, eating and drinking again.

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Hi Legomum,

I have had this prescribed also - by London centre of excellence., although as my worse ulcers are deep in my throat it only works to some extent (even with gargling).

My main complaint about this triple mouthwash is that i find it stains my teeth really badly. I know its vain to mind but this wretched illness takes so much away that I do like to keep whatever dignity I can! I am going to ask if i can leave out the antibiotic as i think this is what causes the staining. It was suggested I clean the teeth occasionally with bicarb to remove staining but don't find it very good. i do get my teeth cleaned at dentist every three months. I also found the mouthwash made my teeth sensitive but they gave me a toothpaste for that at the Centre which does work (contains extra fluoride.)

Do you have the staining problem at all?

best wishes

Sian

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Hi Sian,

Oh I can only sympathise! Yes I definitely noticed the tooth staining but not sure which ingredient to blame, probably the doxycycline antibiotic. I think it is worse if you swallow oral antibiotics - did you take any courses of those? I am a regular at the dentists and hygienist, use duraphat high fluoride toothpaste and am obsessive about cleaning daily with those interdent brushes and floss as a past Behcet's flare was triggered by a dental abcess.

I also need to keep going with triple mouthwash for the ulcers further down run throat so am trying not to be vain for now. Also trying hard not to notice the weight gain from my high dose oral steroids....with recovery, returns my vanity!! But I know I nee these treatments to get better so having to grin and beat it and just be careful what I eat etc.

I have promised to treat myself to professional teeth whitening when I am better to get the sparkly smile back. I had to whitening done about four years ago (before my sister's wedding) and it was really effective. Quite expensive as the dentist measures you for a special gum shield that you then add the bleach to at night, but then you have the gum shield to keep forever, so only have to pay for the whitening gel/ bleach from dentist. Mine was 10% carbamide peroxide gel and you start using it for a couple of nights and work up to the colour you like. but the gel can sting around the gums and may also make teeth more sensitive - I doubt it is that healthy really but I know it did not trigger Behcet's flare in me before when I used the gel. Hope you can hang in there as you treat the flare.

The other trick to make teeth look whiter is red lipstick :)

Good luck!

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Hi, ask your doc for a prescription of "magic mouthwash"...There are several versions of magic mouthwash. Some are available in pre-measured kits (First-Mouthwash BLM, First-BXN Mouthwash) that can be mixed together by pharmacists, while others are prepared to order by a pharmacist. If it's determined that magic mouthwash might be helpful, your doctor will write a prescription.

Magic mouthwash usually contains at least three of these basic ingredients:

An antibiotic to kill bacteria around the sore

An antihistamine or local anesthetic to reduce pain and discomfort

An antifungal to reduce fungal growth

A corticosteroid to treat inflammation

An antacid that helps ensure the other ingredients adequately coat the inside of your mouth

Most formulations of magic mouthwash are intended to be used every four to six hours, and to be held in your mouth for one to two minutes before being either spit out or swallowed. It's recommended that you don't eat or drink for 30 minutes after using magic mouthwash so that the medicine has time to produce an effect.

As hard as it is to do - you have to try to alleviate stress so your body can heal. The stress for many of us is a huge trigger and major obstacle to recovering. It is hard not to get stressed when these things happen (I totally can relate). But it becomes a vicious cycle that unfortunately only you can stop. There are so many aspects we cannot control with Behcet's but stress is one thing we can try to find a way to manage on our own and control better somehow. The answer to "how" is different for each of us but I know you can do it and wish you all the best.

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I am on this and it really does help.

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Hi

firstly this to me was the worst part of Behcets as I had mouth ulcers for at least 11 years solid. Once I started immuran 50mg twice daily and colchicine 0.5mcg X2 twice daily it sorted out that problem quiet quickly. I am still taking these tablets and when in a flare I just up them for a day or two and it normally stops them progressing. Hope this helps as this to me is the worst part of Behcets. Good luck 😊

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I am so glad I have found this site. The replies from everyone helps encourage me and keep me from feeling so alone in this struggle. It is the replies that make it a little less stressful. I just hope and pray i can make it through this. I haven't eaten in days .... Thank you all so much for helping a stranger through

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Hey, that's what we are here for. Keep in touch and don't be shy we support each other, lend a shoulder to cry on, listen to rants and best of all laugh together.

Hugs

Billi

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I have been on 14mg/d Medrol tabs and 200mg/w Cyclophosphamide IV injections for over 3 months and no mouth ulcers so far,,,,Hope this will help, good luck!

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For mouth ulcers, I use medical grade manuka honey, as soon as I notice a tingle on my tongue or inside my mouth I plaster it all over, 8 times out of 10 they do not appear. I also use propoils. It seems to work for me.

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I use manuka shampoo now as I have sores in my scalp. Soluble predisilone for mouth washes but to swallow instead of spitting out as GP thinks I could have ulcers in the GI tract so swallowing the steroids is beneficial to me and it works. After a few days the ulcers lessen in soreness until the next lot!

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Hi, I've written a few posts recently about my son but we're not sure yet if what he has is Behcet's, so I hope ye don't mind me contributing when there's nothing definite. He has just had a hospital stay with really bad mouth ulcers/blistering down into his throat, and also on his lips. He had to have a few high doses of steroids but they helped to clear them up really quickly after a week of having a lot of pain and hardly being able to swallow water. I don't know if this is helpful but I really sympathise with you, having seen what my son went through. I certainly am not in a position to offer advice but I wonder if your symptoms are this severe if you need to see a specialist to help you manage the pain? I'm sending you my best wishes and hopes for a speedy resolution!

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I've just realised that the original post was 2 years ago - apologies!!

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