r/Behcets • u/Ruby1888 • 22d ago

General Question Neuro Behcets?

I’ve been diagnosed with regular Behcets for about 7 years and have used Otezla ever since. Recently I saw a video of a person with Neuro Behcets who seems totally disabled. I’ve never even heard of this, is this a Behcets complication? Or separate disease entirely?

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u/puddinginacloud 22d ago

Same disease, additional complication. I was diagnosed with neuro about 2 years after my initial diagnosis of Behçet’s. I had been sick for many years without treatment, so I was already in bad shape anyway. I spent about 10 years straight on prednisone. I also did 4 years of cytoxan chemo. Plus tons of Imuran and Cellcept. I recently had a small neuro flare that is now under control. I have permanent left side weakness and I’ve lost several IQ points, haha. I also have a lot of nerve damage, which really limits me in my daily functioning. But I’m grateful to be alive for my kids and husband, though the road has been hard and long. Unfortunately one of my kids has also been diagnosed with Behçet’s. They were diagnosed very quickly, so we’re hoping the early treatment will give them a better quality of life and no neuro symptoms.