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Behçet's UK
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Bechets syndrome

Behcet's syndrome

Hi I am 29 year old male and I have been dignosed today with bechets. I am in alot of joint pain and mouth ulcers are horrific. I got offerd steriod Injections in my knees but would like anyone on here to tell me if they work or do nothing.

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Hi I'm Donald you don't say where our from did you see a specialist or was it ur doc once you start these injections it's short term and get less and less each time there is special hospitals in Manchester Birmingham and London maybe look in to these yours Donald

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Hi Donald I live up north and I saw a specialist today which said steroid injections in knees. I am in crippling pain at the moment can't walk to far

Can't sleep it is terrible. Im new to this forum so just getting my head around the forum and the dignoses I got today.

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Hi Pete!

I am sorry to hear you are in so much pain. The steriod inj for BD area temporary relief. What other approches have you taken?

I hope you feel better soon!

Ash

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Hi Ash

Thanks for the reply I am on betamethasone three times a day colchicine twice a day and awaiting blood test results to start some other tablets which requires me to have blood test every 2 weeks at the beginning. Also have dilfram mouth rinse.

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Are you in contact with behcets centre of excellence? There is a medicine pathway which should be followed in reference to symptoms etc. If you go on the behcets syndrome society Web page you can access this info.

Don't know whether you are on prednisone (steroids) this helps with getting symptoms under control quicker. For mouth ulcers I use the brown asthma inhaler, spray this directly on ulcers. It hurts like hell but ulcers heal quicker. I also use soluble pred (steroids) X2 in 10mls of water as a mouthwash twice a day and diflam mouthwash to numb mouth & throat. Hope you feel better soon

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Hi Norman

Thanks for the message. My consultant is sending me to a bechets center of excellence in liverpool which I am awaiting the letter of referral. I take the betamethasone which is a steroid they put me on. I have astma

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Asthma

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Asthma so I will try that as well.

Thanks

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Hi, I'm sorry that you are in so much pain. I used to have horrific mouth ulcers, I found that mouth washes made things worse so I stopped. I use Aloe Vera Forever Bright toothpaste which is very soothing, have used for the last 2 years and since then no ulcers. Will take a couple of months but give it a try, all natural. Also keep a diary of everything that you eat and drink as with me coffee is a no no, milk and many other things. Also I would get a vitamin D test done to see if you are deficient as I was, the pain in my legs was horrendous. I had a course for 2 months now I take a supplement every other day, pain gone. Not saying that this will cure your pain but just another thing eliminated. I hope that this helps. All the best Biddy

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Sounds wrong that I should be congratulating you on your diagnosis, but at least now it means you can get help before you develop anymore symptoms. I have not had joint problems like you, but I know of people non-behcets who have had these injections and they do make a big difference. My advise to you, after being diagnosed very recently at the age of 49, after years of symptoms, is if you get the slightest problem with you eyes, get straight to see an ophthalmologist. Skip the GP, get seen immediately. If caught early, eye problems can be resolved. Unfortunately I didn't understand this, and it was only after I lost most vision in one eye that I was finally diagnosed. Keep well.

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Hi Pete

My son is a 29yr male as well. And I no what he would say try it all yourself as some things work on some people and not on others. Get your self to one of the centres as they have really helped him. I no this will be no help but I'll ask him to reply to you.

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Thanks everyone for the nice messages and I appreciate your advice from all off you. And yes it is a relief that I finally got dignosed so I can start treatment now.

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Try triple mouth wash from your gp.

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Hi all

I have put a picture up off my eye it has a ulcer under but all off my outside off my eye is swollen and bruises like look. Sore and warmth coming off the swelling. Any other people had this ?

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You need to be seen my eye emergency (eye a&e) or an optician. They can send you to the hospital with a letter & you can be seen the same day

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You can take drugs.

You can at the same time change how you eat to improve things.

Coffee causes the mouth to erupt.

Tea causes the mouth to slough the skin in the mouth.

This causes great pain..I know..nothing like experience...

Gluten irritates the system.

Dairy causes eye pain..the soft tissues erupt.. and clog the ears which cause problems with balance. After the funeral of my father I went home to a huge tub of dairy ice cream...and the eye pain after lasted for weeks and the doctor didn't want to know...irregular small amounts of dairy seem to be ok.

Basically bechets seems to cause a very sensitive reactive system.

I once met a woman whose child was allergic to almost everything, and the child lived on rice

Lamb and a few green veg. It was tough but the child was fine.

The foods that can be eaten..there are plenty...basic rice pots veg ..

Once you have found a diet that leaves the body feeling fine then the fun starts.

Introducing one food at a time...

There is curious satisfaction in eating a chocolate pud and knowing that next day your eyes will hurt and mouth will be sore.....and yes the next day your eyes are sore and your mouth hurts...there's less suprise and more control.

It's a long and wonderful journey, you are young and strong and up for a challenge.

It's war and peace at the same time.

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Hi Pete11. Just wanted to wish you well. Glad you have the diagnosis so you can start to get the proper treatment and have some ease if at all possible. I don't know if you deal with fatigue, nausea from the meds. It doesn't help that much but I use lavendar, franckencense and wild orange oils to even remotely manage. When I am in pain are night I get into a warm bath with Epsom salt.

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