Behcet's Syndrome Society

Help/advice

Guys,

I understand that behcets affects us all in different ways it seems to me that treatment and medication is also widely varied...

I am keen to use the experience of others on which steps to take next as I am only just being diagnosed!!!

I would really appreciate if you guys could post the most effective medication Or treatment of ulcers both oral and genital in your experience?

Thanks in advance👍

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If I don't get stressed- I don't have ulcers.

Colcrys has worked really well for me for upstairs and down stairs.

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Mouth ulcers use Forever Bright Aloe Vera toothpaste without floride. Really works too many chemicals in every day toothpaste.

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Hi CLENIL inhalers and nose sprays work for me every time. Also a drug that has worked for many of us is colchicine. You must remember that all the hard drugs have side effects and it is a balancing act drug versus symptoms. I find it best to try anything for at least a month to give your body time to get used to it.

Hope this helps .

Billi

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Clenil inhalers really helped me with the genital ulcers took away the soreness and helped them to heal faster. I also gurgle with diflam mouth wash (you can get this behind the counter). The inhalers need to be prescribed. You then need to trial lots of different medication to find the right one for you to try to keep everything calmer.

Good luck,

Kezzle :)

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Hi Paul email if you need any info leaflets or info regarding referral to any of the 3 Behcet's Patients Centres in England. Best wishes. info@behcetsdisease.org.uk

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Aside from pharma help, lots of little things can make a difference, it really is a question of what works for you.

As this is an inflammation disorder, you might want to consider avoiding things that irritate your body and when in flare, promote a healing environment. I know it sounds obvious but a good starting point is considering your basic requirements: getting enough quality sleep, avoiding refined sugar and eating well.

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