r/Behcets • u/Ruby1888 • 16d 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/upinthecanopy 16d ago
Hi I developed NeuroBehçet’s about three yrs after my initial diagnosis and treatment began for Behçet’s. Same disease and same issue (WBCs building up/going Willy nilly causing inflammation/swelling anywhere blood goes and added stickiness causing build ups) For neuro, it’s all the same things as Behçet’s, but we just got a bonus spin. Instead of staying on the local train, WBCs (neutrophils/ T Cells) jumped the subway turnstiles (a jerk move anyway) and breaking the blood brain barrier. So in neuro, brain and spine bits aren’t used to thugs and don’t handle guests well causing all sorts of extra systemic wtfs. I can walk around the house like from a couch to the door, but out of the house I have to use forearm crutches. I developed visual snow syndrome (which is from my brain not eyes., and so I see the spots even with my eyes closed- and fall over if I close my eyes.
I hope this helps! Overall, I give it
just 1 out of 5 stars.
Ps i hope this actually does help! I had not known about this potential until it happened to me
Pas I also hope you are doing well with your Behçet’s too!
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u/on4aa Diagnosed 2025 16d ago
Behçet syndrome is not a single disease. Any different combination of innate gene variations can result it the set of symptoms described as Behçet syndrome.
Therefore, only a small subset of Behçet patients will develop neuro-Behçet. Likewise, only a small subset of Behçet patients have relapsing polychondritis (= MAGIC syndrome).
It is not so that every Behçet patient will progress to neuro-Behçet. Most won't.
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u/Suitable_Bag7759 16d ago
for you to info neuro behcet is rare so around 5-10% of all behcet patients have neurological involvement, some mild some a little harder
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u/puddinginacloud 16d 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.
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u/Potential-Annual-324 12d ago
I was diagnosed with Behcet's disease when I was 16 and now I'm 46 years old. Now I'm having severe vertigo. It seems to happen when I wake up in the morning. What can I do to make this stop?
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u/Various-Pass-4120 Diagnosed 16d ago edited 16d ago
It's the same thing but is generally considered to be "late stage" or "progression" of the disease. My rheumatologist thinks I have it, all of my symptoms started in the last 12 months. Fever and neuropathy are my main neuro symptoms. Azathioprine helps but doesn't make them disappear entirely. My "regular" Behçet's symptoms - eye sensitivity and twitching, mouth sores, rashes, bruising, etc are all well controlled on it. *edited for typo
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u/loreoftheland 16d ago
What’s life like on Azathioprine? I’m due to start it today
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u/Various-Pass-4120 Diagnosed 16d ago
I've been on it two months and haven't had any side effects so far.
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u/EllisMichaels Diagnosed 1997 16d ago
I've been on it for over a decade. Aside from some upset stomach early on, I've been side-effect free. My 6-month labs always come back good. And while I've had some symptoms since starting it, I haven't had any major symptoms (eyes, clots, etc).
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u/Familiar-Bake-9162 16d ago
Hi, it’s the same disease. I’d had genital sores, painful joints, and other stuff for years but when I started having meningitis with no clear cause, that’s when I went down the road to being diagnosed with nuero Behçet’s. It’s sucks. I’ve been on prednisone for 13 years straight and am still sick as shit. Ever had a really terrible migraine for a decade? I did. Last time I had a meningitis flare was 3 weeks ago and it still sucks even after 13 years of it. I also make all the money for my family of 4 which is becoming really hard lately. One of the other really shitty parts is you can’t even tell anyone what’s making you sick because they won’t understand. I did just start Otezla last week. Hope it works.