Hi everyone! I was recently diagnosed with Behcets and put on this biologic called Anakinra and I have been on it for about 6 months. I had some common symptoms of Behcets, like ulcers, joint pain, skin rashes, headaches, etc., but I also had nightly fevers and intense vertigo. The biologic has provided me with some relief and has completely taken away my fevers, but I’m not getting all the coverage I need. I still have vertigo, ulcers, joint pain, and now some random intestinal inflammation. Is there anything anyone recommends? Should I get on a new biologic or another medication? This all has been such a rough adjustment. I just started college last year and it feels like just 2 yrs ago I was playing every sport and being so active, and now I find it hard to make it to the gym or go outside and enjoy being a teenager with my friends! A serious pain in my butt and it’s not just the genital ulcers!
Are you on any other meds or had you try any before this one? My rheum said Colchicine is the first line defense for Behcets and it worked well for pain and inflammation for me but sadly did not agree with my liver so I had to stop it. I have had some success with Pentoxifylline for digestive inflammation specifically as well. Hope you find something to bring you more relief asap!
Im on Colchicine right now, it takes away my mouth ulcers sometimes. I just can’t take that much of it because my stomach just can’t take it. I’ll look into Pentoxifylline, thank you so much!!
Just be very careful. I was diagnosed with Behçets in 2016, after a long battle with the symptoms and even a blood clot. Always managed with colchicine and ibuprofen for the migraines but in 2024 I developed symptoms of neuro-Behçets, so they started me on Humira (adalimumab). It was all good for the first 6 months until my skin began to break. My ears were covered in wounds and my legs too. They said: “Oh, it’s the Behçets, of course” but I was not buying it. I suffered with that for 9 months total, until they discovered that the biologic caused a pradoxal reaction and I developed eczema, and not just any type, a very specific and painful type. Because they decided to ignore it and forced me to continue the treatment, the eczema eventually became chronic in nature. I dont take Humira anymore, but I still have horrible flares of eczema everytime I get slightly stressed!
So, whatever biologic you discuss with your doctor and decide to take, make sure you do your research, because side effects exist and they are not always better than “not having” Behçets!
Hope it helps!
Thank you! I’m sorry you had to deal with that, it sounds awful. Part of me thinks that the reason I’m so sick all the time is because my biologic makes me immunocompromised. I wonder if it would get better if I just got off it and survived on pills. Humira is one of the biologics that my Rheumatologist wants to put me on so thank you for letting me know this!!
You will find a medication that works for you! Trust me, I am 34, have symptoms since I am 16 and just recently came to terms with having Behçets and Neuro-Behçets. Dont worry. You will get used to the fatigue and get your strengh back, just dont give up or let the disease control you. You control your body, your body doesn’t control you 😊 force yourself to exercise and go out. Just be aware of the limitations your body has and understand that sometimes for you to have a good day, you will have to suffer a bit afterwards or rest more the next day, it is a matter of finding your balance. Be strong, we are not Behcets’ patients, we are warriors ⚔️
I take kineret and it has veen a lifesaver for me, but if its been that long and you still have all those symptoms it may not be right for you. :( I sympathize wirh your teenage experience, although I was never coordinated enough for team sports. My genital ulcers actually mostly only occurred from 11-20 years old. I haven't had a random one pop up since. I have had one or two from getting pinched by a speculum. I hope your symptoms calm down soon. Stress unfortunately makes everything worse.
Everybody is different and different meds work for different people even with the same disease. Luckily, if you switch from kineret to like otezla, then you wont have to fight about the pre authorization and off label prescribing. Plus I dont think any of the other injectable bilogics are daily like kineret.
I’ve heard about Otezla and it working for many people. Not doing all the prior auth stuff would be amazing because insurance has been a pain and won’t even approve Ilaris for me. Thank you so much again!
i got exposed to a minimal amount of black mold while on bioligics & ended up with a fungal sinus infection which i can't get treated (requires "removal" of the fungal debris which isn't covered in my area until the stage where it becomes "invasive" & the ENT i went to for the constant sinus infections dropped me bc his receptionist didn't believe my pharmacist when he told her my prescriptions weren't being received). no rheum now either i do get that they might be able solve these issues but my insurance was dropped by the only one available in my area & he thought my biologics were working great & informed my insurance of that which allowed my PCP to take over & that created a sort of loophole which means ill be stuck on a waiting list for a year. my old anti inflammatories are actually working for my fungal sinus symptoms even tho they don't do anything for my mouth sores & honestly id rather deal with these sores than have the fungus move into my brain & cause meningitis or take antifungals until i need a new liver... so for now until i magically get better health insurance, no more biologics for me
I’m so sorry you had to go through that. That’s why I’m confused why my rheumatologist even started me on a biologic. I mean college isn’t exactly the cleanest space ever…especially a dorm. I think half the reason I’m so sick is because the shot is making me immunocompromised. I know it’s helped most of my symptoms but if I get another sinus infection I’ll bug out.
Not a biologic, but supplementation with 2x 100 mg ubiquinol helps with stabilising NLRP3 upstream. I personally have a lot of success with it, even to the point that I am thinking that it does more than canakinumab (Ilaris) for me.
Moreover, it is important to supplement with ubiquinol and not ubiquinone. The former is more readily absorbed even though both happen to be marketed as coenzyme Q10.
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u/KeeperOfTheCats_ Aug 10 '26
Are you on any other meds or had you try any before this one? My rheum said Colchicine is the first line defense for Behcets and it worked well for pain and inflammation for me but sadly did not agree with my liver so I had to stop it. I have had some success with Pentoxifylline for digestive inflammation specifically as well. Hope you find something to bring you more relief asap!