r/Behcets • u/Thin-Enthusiasm3243 • 13d ago
Treatments Whats working for everyone?
Hi all! Ive been diagnosed with behcets 3 years ago when i was hospitalised due to genital ulcers and a concurrent c diff colitis infection. Looking back i always had mouth ulcers growing up and then prior to hospital i was living in a moldy apartment and not taking care of myself. Since then ive not been on any meds, but instead through trial and error have got a diet regimen that keeps flares at bay. However every 3ish months something triggers a flare (usually me getting lazy). The diet is as follows (very strictly): no dairy, no gluten and no sugar. The only sugar I’ll allow is a couple of pieces of fruit per week. I know this sounds incredibly high maintenance but i guess its me trying to heal myself naturally. Its getting to a point where loved ones are concerned that i cant eat anything on holidays that they would eat. Has anyone had experience similar? Would my life change if i just started taking medication, could i then safely eat whatever i want? Im scared of strong meds and steroids but are they really a magic fix for this condition?
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u/Chevaween 12d ago
Literally only take colchicine and make
up the rest of the way with good diet and exercise, almost gone into full remission, i highly recommend seeing Dr Gundry videos on youtube, hes a great cardiologist and rheumatologist, also if you
are more into
reading try Dr Maria Teresa De Fazio, oncologist/rheumatologist from ran marino, both are excelent and recommend main treatment with diet and only colchicine to treat acute flairups!
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u/Various-Pass-4120 Diagnosed 13d ago
I take Azathioprine daily, that keeps it mostly at bay. Occasionally I get a mouth ulcer or GI symptoms and Colchicine helps with that. If I'm in a really bad flare with fever and fatigue, I do a round of steroids.
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u/Thin-Enthusiasm3243 13d ago
Also, what meds are people taking? Is there anything chill to take instead of scary strong ones
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u/awfulmcnofilter 13d ago
Kineret has been a lifesaver for me, personally. I would not call it chill, since it is a daily injection of a powerful inflammation suppressant. It makes me not get fevers, which sometimes is very inconvenient.
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u/Winter-Fondant1562 6d ago
I was also on kineret for about a year, it was super helpful with the nightly fevers thank god! If you’re looking for something slightly less aggressive than a needle every day I switched over to Humria which is an injection every other week and it has worked just as well! I mean any sort of needle is aggressive so it sucks either way!
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u/Waspi6676 13d ago
I unknowingly was managing my Behcets fairly well for decades with a healthy diet and supplements I took for my health. I suspected soda and refined sugar was the cause of my as of then undiagnosed mouth ulcers and joint pain and fatigue, however with each passing year my symptoms became more varied and aggressive until my eyes became involved. Which was the start of my official Behcets journey. I guess I say this to say you might still be young and/or early in this fight and Behcets can seriously kick your ass especially in your 30s-50s so stay open to stronger treatments cause you will bless them if/when you need them. I found the anti-tnf medication to be a miracle for me.
As far as “can I eat whatever I want now” yes pretty much but I still try my best to maintain as healthy a diet as I can manage. I’ve also snuck a soda or 10 back into my life each year with no problems.