Otezla: Hi! Has anyone been put on Otezla? How... - Behçet's UK

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Otezla

Camp1997 profile image
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Hi!

Has anyone been put on Otezla? How did it help with your symptoms and management of them? Currently on imuran and getting toxic affects so this is the next one they want to try!

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Camp1997 profile image
Camp1997
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just-a-guy profile image
just-a-guy

I was on it. Reduced my oral ulcers drastically, but had rather severe mood and GI upset/cramping.

Niki318 profile image
Niki318

I am currently on Otezla and love it! It did cause me to get nauseous etc for the first 2 weeks of taking it but after that I am quite well. My ulcers rarely pop up anymore and I’ve noticed I have less body aches and pains. I take 30 mg twice a day. I do get fatigue in general and Otezla can make you more prone to infections but any immunosuppressant does so. I luckily did not experience the mood swings that can happen with Otezla but it is possible to get mood swings and changes with Otezla so if you decide to take it, it’s important to follow up with your doctor at least once a month when you first start taking it. Hope this helps!

Camp1997 profile image
Camp1997 in reply to Niki318

Thank you!!! I’m sure hoping it works for me as well as it has for you ☺️

Niki318 profile image
Niki318 in reply to Camp1997

I hope so! ❤️ it’s actually the first medicine they tried for my Behçet’s! I’m not on remicade or any other medications other than for my blood pressure or steroids for when I get eye inflammation! It’s really improved my quality of life and I hope it does the same for you! It is pricy but if your insurance for some reason denies it Otezla will supply you with medication for free until your insurance does! 🙂

JeezLouiseNowWhat profile image
JeezLouiseNowWhat in reply to Camp1997

I am on it and am loving it, as well! I'[ve been on it for about thirty days- and have noticed a HUGE reduction in symptoms! I'm also on injection methotrexate, as well. The two seem to be working brilliantly for me. I have Fibro as well as Behcet's, and am currently battling the pain and fatigue from that- and inflammatory arthritis-although THAT seems to be part of Behcet's. The Otezla has helped with not just the ulcers in all odd places and normal ones, but also with a lot of my small joint pain. That excruciating finger and toe/ankle and wrist/ pain? It has diminished. Idk if this is the Otezla on it's own or if it is the combo of methotrexate and Otezla. I DO hope that it works as wel for you! O- there is a bit of nausea associated with both of my meds, for me-and some headache from the Otezla. I manage with anti nausea and maxxalt for the headaches. I've also experienced weight loss and a huge appetite suppression. Like, ii'm just not hungry and need to force food most days. Since I gained fifty lbs with other treatments, i'm not seriously complaining !!! LOL In just under a month, I've lost 9 lbs. Not water weight, consistant daily weight is 9 lbs less. :) Great good luck to you!!

Gentle hugs and let us know how you do!