Behcet's Syndrome Society
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can any one help

ive just been diagnosed with bechets I suffer fro ulcers which last 3 weeks then are gone but back 10 days later I also get them on intimate parts of the body I suffer from boils/skin leisons plus bad arthritis I can barley walk get in bath ect also get realy tired ive got to go in hospital for meds there worried about my blood count this has been ongoing for 5 years with no respite can any one suggest anything that might help ive tried coloccine /cyclosporine the only pain relief I get that works are the lidnoquain lollies which are great any suggestions would be appreciated

5 Replies

There are lots of different medications to try for Behcets, if you have only been offered Colchicine and cyclosporine then I would question how much knowledge your current Consultant has.

If you are in England you can request a referral to one of the Behcets Centres of Excellence.


The Cebtre of excellence is first class. I wasn't well on the day as I suffer from a head injury and chronic fatigue and fibromyalgia.

All the different people you'd normally see separate over weeks or months are under one roof But the purpose is you are given access to these specialists in one visit.

For me predisilone used soluble as a mouthwash then swallowed help tremendously during a bad flare.

Good luck.


I honestly found dietary changes were the thing that started to put my symptoms in remission. I cut all sugar and carbs out. Others on here have done the same and have had success within a month. I noticed a difference within 10 days. Google anti inflammatory diet as a start and trim it from there if you see fit.

Sleep as much as you can. Drink water. Clean up the diet. Medication can only do so much if youre not doing things on other ends as well.

Good luck and keep us posted.

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I have been feeling ill as of late and a few days ago I felt as though a train ran me over. My head hurt, no energy, made some work errors. I had baked myself a nice tin of banana bread a week or so ago and put a very generous amount of cannabis in it. My train wreck day I chowed a big ol' piece of bread after dragging myself home from work (about 6pm). Laid down in bed literally 6pm and tuned out until 7AM the next morning. I did get up for a small bite to eat. Woke the next morning headache was gone (incidentally has not been back in force yet. Mild last night). Other various items felt improved and the ulcers have begun a clear mend. Went into work feeling much improved. Your mileage may vary.....


Thanks for all the help I'm getting g teffered to liver pool its been 5 years since my symptoms first started I've had to take early retirement I'm in constant pain most of the time I've had this bout of ulcers 4 weeks now when they go its only for about 10 days then there back regular as clockwork my arthritis is worse as is my mobility and fatigue tired all the time going for another mouth ulcer biopsy today hope it goes well it nice to talk to people who are going g through the same thing its a horrible condition to have


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