Behcets syndrome

hi all this is my first post on here but i have been on following an reading on here for about 6 month im female 38 an been diagnosed with behcets for roughly 2 year this november but this was after a long time maybe 4/5 year undiagnosed with m

out ulcer every other week told was diffrent things each tjne dentist smokin ect then after 5 year suffer only the mouth i lost my eye sight in both eyes for two weeks wich i now no was ulcers in my eye then after this everything is happening to me at diffrent ti es but diffrent part of the body for examlle first my nails have drop off or gone then skin rash then i got camera down to b told inside is inflamed so basically i taking tablets daily an creams steriods for any an everytging . but when i ad a bad flare like eye sight i was giving prednisole steriods wich worked brilliant 2 year down an i av been back in hosputal all same things i mention but now they give me colchezine one 500 daily im not sure how to feel jus yet as im only in y first few month of taking it but the flares are milder so not sure .i was last told at my hospital to complete a 3 month coyrse of iron ferrus sulfate wich im nearly comin to the end of but little nervous as i was told something about nexr step is suppresin my immune system as its to active an heard chemo tharapy i would be grateful if any one as any info on anythkng the illnes the chemo an i want to go to one support groups as it embares me i dont know much about it or why but i seem to be a loan with it so im glad i found this group

5 Replies

  • sorry forgot to mention the most important part this all only hapoens to me when im due and on my period all the time so this is linked but not gone down tnat road yet at hospital but i no myself when im startin to flare could be something simple like one finger out of ten red an swollen then next day its complety vanish as if i made it all up thank god for steriods i have a good friend who as taught or helping me understand this thing or i wouldnt know wgats goin on but my friend as witness if my period or i dont sleep enough all thee things start an as i say the steriod she explains what is doin bringin down inflamation an the flare never last longer than a night beacuse she straight on to give me my medines an must say steriod have never let me down they have cleared any of it but i cant live on steriods forever but tnry defo work an treat my flares straight away

  • I am currently in hospital with a bad flare up, my 4th hospitalisation since last October, only this flare started with the skin growing thick under my nails and pushing the nails off the nail bed followed by small blisters on fingertips resulting in nails falling off, and I also have eye involvment. Both issues the doctors are dubious it has anything to do with behcets simply because they haven t seen this before. The front layer of skin on my eye has completely peeled away but once again they are going down the viral infection root. I am sitting here waiting for the viral swop to confirm it is not viral (as it has done the last 3 times). So fed up with doctors dismissing it as all related to the behcets simply because they ve not seen it before. You are the fist person I have heard of where you have lost your nails.

  • Sorry to hear In hospital its so scary coz u don't now what to expect next An. No one really knows or pass u from pillow to post I been reading up on it an can't understand how I jus now get it at 38 year in life an no one can tell me coz they don't no so do a lot of thinking An assuming An quesin . Wish. U a speedy recovery

  • Cut out wheat, dairy, tomatoes and over ripe fruit, I manage my Behçets this way, as I found that I was intolerant to the bulking agents in medication, and also sugar, B vitamins any food's fortified, i,e anything that is heavily processed, and just use warm salted water as a mouth wash, it's the migraines and chronic fatigue I struggle with to control.

  • Thank u for this I will try it

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