Mouth ulcers

[Dinkyjojo7]

Hi can anyone help please?? I have bd and have suffered constantly with multiple mouth ulcers since May 2015 . I am currently taking Mmf 3 gms a day and have been on this now for last 5 months . I have had no improvement at all in them or the fatigue and headaches . I can only eat bland , mashed food and even drinking hurts . I have tried mouth washes and triple therapy mouth wash recommended by the Coe but nothing is working. I saw my rheumatologist on Monday and was told this is as good as it gets . I am in constant pain with my mouth and feel really fed up even talking hurts my mouth. Please can anyone advise me?? I'm desperate now xx

[billi]

Hi and sorry for the pain. There are other meds you could try. Firstly have you tried colchicine, it does have side effects as most of the other meds do. But lots of us get relief using it especially for ulcers. Secondly you could try a CLENIL inhaler, a few puffs in the mouth 4/5 times daily got about 5 days but DO NOT swallow blow it out, gradually reducing if things improve. This can also be used fo vaginal or anal ulcers. There is also a nasal spray for the nose. As to food and drink, nothing too hot or cold, blend it or dip things into a warm drink also use a straw to drink and a baby spoon to eat. If you have ulcers down below you need to wear loose cotton underwear, and even non when you are sleeping or at home. Also don't rub or use rough toilet paper dab gently and don't use harsh soap, better just warm water regularly. All of this should help you. We have all been through this and if you only have problems in the mouth then that's good. Lots of us have ulcers mouth, throat, one, lips, hands ,legs, and anal and vaginal. Do talk with your rheumy as there are many other meds that may help.

Take care, be strong and positive.

Billi

[Jolee23]

There is a mouth paste you can ask for. It helps my daughter.

[River-Gray-67]

Hi Dinky! I am on Nortriptyline 50mg a night for my headaches. It really helps. I couldn't live without it now. I take vitamin B for the ulcers and it helps a lot. My ulcers on my tongue have gone from being the size of a 50c to the size of a pea. I understand what you mean about bland food. I use English marmite for the ulcers on my lips. The skin specialist that diagnosed me told me to use it. Apparently any marmite will do. I prefer the English brand because its sticky. I put it in the fridge to keep it cold. Its great at night, I paint it on my lip and go to sleep. Heals it within a couple of days. I also have problems with loosing my voice due to ulcers down my throat and inflammation. I cant help you with the chronic fatigue sorry! Its with me every day. One thing aI do know is try and relax. I know its hard but stress makes all the symptoms worse. Xx

[magirose]

I am going to suggest something quite radical which is to go somewhere else for your treatment. I used to go to Royal London and got this kind of treatment. They are pretty awful there and don't take symptoms at all seriously which they should.

In the end I asked for a referral to Addenbrookes in Cambridge to the vasculitis unit there. It was the best thing I ever did. I now have great treatment and have been almost symptom free for 3 years. The viscious migraine was my worst symptom. Royal London would not treat me properly. There are many meds available you could try. I fail to understand why this is happening to so many of us. Have heard so many stories like this in regard to the coe.

[2106]

Hi I have always suffered with many mouth ulcers, I have stopped using any toothpaste which has chemicals in it and only use a natural one now. I use Aloe Vera Forever Bright as this is totally natural. For the last couple of years have had these totally under control. Also use Merc Sol 30c which is a homeopathic remedy which you can get from any health shop. With these you never touch the tablet always put into the cap take 2 every 4 hours and then once mouth starts to feel better reduce to 1. If non of this works for you it is all natural with no side effects. All the best

Biddy

[AmandaMoseley]

This is not "as good as it gets" - your Behcets is NOT Under control and that is why you are having so many mouth ulcers. You need to change the medication you are on as it is clearly NOT working - you either need something adding or a change from Cellcept.

You also need proper pain killers to help a little with the pain

If you are at the CoE then make an appointment (I know London are overwhelmed with numbers but they are starting at least one more clinic) - although I was not aware they were using Cellcept anyway.

You also need to be on Iron tablets - mouth ulcers interfere with the absorption or iron from food

[VM75]

Agree with the others this is not as good as it gets and by the sounds of it your Behcets is not under control and your not supressed enough. My dentist recently recommended a toothpaste that doesn't contain SLS to use always, then as replies below a clenil inhaler sprayed directly onto the ulcer, for relief before eating Difflam works very well and Beclemetasone i think thats how its spelt disolved in a tiny amount of water swilled around, I initially saw a Professor at the Eastman Dental Hospital when first diagnosed and before the biological medications who prescribed the above, I havent had any large mouth ulcers for a long time just the odd ones on the roof of my mouth or corners of my lips which I use various therapies, what is MMF?

[JoeCh]

I'd agree with the last comment from VM75, I use betamethasone soluble tablets, I've been on these for a couple of years and really helps. I'd also agree on treatment, probably time for a review to get a slightly better hold of the condition.

[m82girlygirl]

You need a new doctor! How dare they send you away in that kind of pain! With no meds!!

I am on azathioprine and jave prednisone if I get and outbreak of ulcers which I currently have starting. I'm waiting on a call back to look inti the Clenil inhaler others have. I have an army of pain meds when the ulcers become unbareable.

I found a protein shake called Quest Vanilla and u was able to blend it with almond milk. This was all I was able to have for months

[Hidden]

Hello Dinky... I am too on betamethasone , this was given to me because of the scaring the ulcers create , narrowing my throat ... And on colchicine... This made a massive difference, keeping me level even in heavy stress. Another recommendation that I was given was to cut down on gluten food... As it doesn't help with inflammation ... Also for help I ask my then doctor to recommend me to the London behcet clinic ... They accepted and for the last 2-3 years have been regularly followed - the visits are 3-4 hours long as you are seeing different specialists but they have been absolutely wonderfully efficient and supportive.