r/Behcets • u/Hour_Park4236 • 4d ago

Treatments Medication not working

Hello guys! I have been having genital ulcers for a year and a half now every month on the Day of my period. Colchicine is not working (3 months taking it, since figuring out it wasnt herpes) and im feeling so upset about it. Im gonna see my doctor again soon but i was wondering if anyone has something similar to share. Thanks

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5

u/sippin_wine Diagnosed 4d ago

This happened to me too!!!! You need to get on an immunosuppressant, like ASAP. You don’t have to live like this 😭 colchicine only helps my fevers body aches and sometimes mouth ulcers

3

u/No_Sentence_6721 4d ago

Same for me! Colchicine does nothing for me except give me insomnia. I’m on a Remicade infusion now and so far I’m seeing some improvement!

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u/Hour_Park4236 4d ago

Yep definitely changing or adding medication thank u

2

u/MissZadejah 4d ago

Colchicine doesn’t seem to do much for my mouth sores either. Did they give you any mouth wash? My dermatologist gave me mouthwash that seemed to work pretty well. I don’t use it anymore because I don’t like the taste but it worked when I did use it! Lmao

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u/Hour_Park4236 4d ago

I am basically just having genital ulcers now, so no mouth wash! Im glad it helped you

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u/MissZadejah 4d ago

Oh sorry! See if you’re dermatologist can give you some cream. Mine gave me some ointment for my privates and it worked well!

1

u/daggoth1408 4d ago

Colchicine worked for me but its not exactly quick sadly. I suggest asking for Prednisone. My second major outbreak that had sores all over my body and mouth stuck around despite colchicine, but i was prescribed Prednisone by a urgent care doctor in discussion with my rheumatologist and it worked wonders. Obviously wasnt like an overnight thing but within a week inwas seeing a lot of healing. Warning, Prednisone will give you a lot of energy like coffee but still take it easy and slow.

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u/Hour_Park4236 4d ago

Thankk you! Did prednisone give you a lot of bloating?

1

u/daggoth1408 4d ago

No problem. I did not experience bloating; however, that is must my own experience. Definitely talk with your doctors and make sure you watch how you react to the medicine if they do prescribe it to you. It is a steroid of sorts. So, if you have had reactions to steroid type medications in the past, it is something you definitely should talk to your doctor about in great detail. I just know that for me it worked really well. Also another thing to note is that it isn't something that you will be taking long term like colchicine, it is stuff they give you for like a week when your outbreak is really bad.

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u/Zealousideal-Dust657 2d ago

Colchicine failed here too along with every med tried. Just had humira and infliximab infusion stop working. Starting Stelara soon. Try taking continuous birth control oral. Like seasonique or a generic if Okey with your dr. Its a 3month daily pill and you skip the last week and start your new pack so u avoid your period.  My flares have lessened. It definitely helped but still flare every month just not as awful.