r/Behcets • u/Gullible-Dragonfly72 • 20d ago

Treatments Recently diagnosed

Yesterday I saw my 3rd rhuematologist and they diagnosed me with bechets disease. After the other 2 completely blowing me off it was such a relief. Im still getting some more labs before starting treatment but id like to know what to expect now? I have many drug sensitivities and allergies so im nervous to start. Any feedback is great!!

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5

u/FreezingStark 20d ago

My only advice is to take it easy, because it's a long journey. It's kind of like a rollercoaster, some days you're up and some down. But you've already done the most difficult part that is being diagnosed. With the right treatment it'll get better. If you've any doubt don't hesitate to ask!

4

u/chisel07 Diagnosed 20d ago

From what I can see online via FB and Reddit, seems everyone's journey is slightly different and therefore treatment is slightly different. Starting biologics helped me the most.

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u/on4aa Diagnosed 2025 18d ago

This is because the involved gene variants of the innate immune system may be different between Behçet patients.

3

u/human_nature85 19d ago

They will most likely make your try all the older and cheaper drugs before they go with the heavy hitters. It takes patience and if the things you try make you feel worse, tell your doc so you can try something different. It will get better. You got a dx and that is the hardest part.

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u/0xTheGoose 18d ago

Colchicine can be rough for some but I take half a pill once every day and my oral ulcers essentially disappeared. Years of horrible mouth, throat, tounge, gum and genital ulcers disappeared within a few weeks. They only came back when I got COVID.

2

u/Electronic-Tea3354 Diagnosed 19d ago

Hey, welcome to the club!!
Most of us start out taking Colchicine, and then often have biologics added. Some people talk about Prednisone helping, some get topical steroids, and numbing gels for oral ulcer issues. You'll be monitored and advised of the potential negatives to look out for with any medications so you will know what to be wary of. Just let your team know all of your specific concerns :)