Sanya Richards at the 2008 Walk for Behcet's Disease - News12

[msmemiami]

I have this terrible disease I am a white full blooded american woman in remission for Hodgkins disease for 11 years I was diagnoised about 8 months ago and wish I could find a decent doctor and better medical care I live in Northern California anyone that knows anything that could help???? thank you

[McKyleLaw]

@msmemiami For me? Embrel helps. But it's expensive ($2,000 a week) + many insurances (like mine: United Health Care) won't cover it, cuz it is "not yet approved for the treatment of Behcet's".

Also, It took several consecutive weeks [after about my 3rd shot] for me to start to feel at all better... and by that time, I was on so many other meds w/ serious side effects, that it was hard to tell if I felt any better!

[jody808]

remission, that's my favorite word when it comes to dealing with my Behcet at this point, i take my predisone everyday and suffer through attacks once a year now.

[karendougie]

i also have behcets a live in scotland and my gp s and that have never heard of it, in fact im the only one in my surgery with the terrible disease, i to live every day in some kind of pain tiredness or just generaly feel down

[McKyleLaw]

A high dosage of Prednisone (a steroid) carries both the Guilt of causing many of the worst side effects, but it also carries the HONOR of being consistantly effective (+ fast) for us BD'ers. Have you been on any 'roids yet?

Or Colchicine? (It's usually prescribed for Gout, but has proven very effective for BD sufferers, like myself.)

Warning: most treatments for Behçet's disease are fairly toxic... the 'goal' is to damage our immune system, so that it might stop attacking our entire bodies.

[35mnbv]

@McKyleLaw What is the best treatment for the mouth ulcers and joint pain? I am tired of being rejected by doctors, and sent away with a prescription for amoxicillon.

[McKyleLaw]

@nwalte02 + @tmmylopez - I have Behçet's disease & now that I know how it 'works' (so to speak) - I can see clear 'precursors' of the disease, dating all the way back to my very 1st yrs of life. It has cycled since then. Off & On. Bad & then, Gone.

[supermummy82]

Im in the uk and would have loved to go on the walk . I think that uk sufferers need more help to raise awareness of the illness as alot of gps are unaware of the symptoms of the illness

[neilam6]

my ex girlfriend has bechets she lives in the uk

[nwalte02]

thats not completely true...i have behcet's and i'm still able to live my life and do what i need to do. granted, it really sucks and i live with pain daily...but at least i can live with it..

[tmmylopez]

I have Behcet's and they are no where near a cure. You got Behcet's, your pretty much fu*cked..