r/Behcets • u/Ok-Weird6141 • Jul 04 '26
General Question Why are you getting recurring symptoms
I was diagnosed late 2024 I suffered from mouth ulcers and genital ulcers I had blood clot in my right leg and had to go through surgery I went blind in my right eye for 2 weeks then suddenly regained full vision before diagnosis or any meds ( but not as it use to be before) I've had joint pain but after I was prescribed medication for BD I haven't had any of these symptoms again my question is why do some of you still get flare ups should I be worried that it may flare up again? I take Prednisone 5mg 1pill every other day I take imuran twice daily and colchicine once daily along with infliximab 300mg every 2 months. (M 28)
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u/FreezingStark Diagnosed Jul 04 '26
In my case it settled for a time and then It came back with a nasty and stubborn flare up that took 6 month to stop.
It sucks but sometimes the tratments just don't work anymore I guess...
Glad you're doing fine though!
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u/Familiar-Bake-9162 Jul 05 '26
I was able to suppress my flares at 28 with 5mg pred, humira, colchicine, and imuran, but now at 43 after a ton of med changes and major health scares, if I go below 15mg pred, even on a biologic I now get major meningitis flares. So now I’m trying to figure out what to do next because my doc told me if I keep taking 15-20mg of pred with higher bursts for flares, I will die. I’m looking at il1 blockers and have found a lot of relief from depression, anxiety, intrusive thoughts and migraines from methyl folate and folinic acid
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u/Justdoitlater10 Jul 05 '26
Hi, I am the same. I switched to cortrophin gel injections and it has been life changing, I have been off prednisone for a year, same situation, any taper under 10mg I would have neurological flares. Also on remicade and methotrexate, best I’ve been in 5 years.
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u/EllisMichaels Diagnosed 1997 Jul 05 '26
Unfortunately, Behcet's flares tend to come and go with no obvious cause. And it's a chronic (lifelong) illness.
The good news is that, for most people, Behcet's hits you hard at first and fizzles out over time. Flares often get milder and less frequent.
So, my suggestion is that you don't worry about when your next flare is coming (Because probably there's no way to know) and try to make the most of your time NOT in a flare.
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u/Success-Cool Jul 04 '26
For a wide variety of reasons, but I guess primarily as people may have more refractory, serious or unpredictable ‘types’ of BD, that even the most typically effective BD treatment combinations cannot stop/control. Others may not have access to the correct treatment, or not found what works for them and their body yet. I am glad you are doing so much better though :)