Skin lesions: Hello! I am on Otezla for my... - Behçet's UK

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Skin lesions

Niki318
Niki318
11 Replies

Hello!

I am on Otezla for my ulcers. So far I haven’t had any ulcers while taking it. I have what looks to be a small ulcer on the back of my thigh. I do get skin inflammation and welts common in Bechets but this is the first ulcer type lesion I have gotten on my leg. Does anyone have recommendations on care? I put Neosporin on it and contacted my dermatologist. It seems to be going down, I’ve had headaches and stomach issues so I might just be having a mild flare.

11 Replies
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Lovingdragonflies

I had horrible reaction to Otezla. You’re right it wipes out mouth ulcers. But for me, I wound up in emergency with migraines and dehydration from diarrhea. It’s a medicine I can never take again. I’m so glad it’s working for you.

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Niki318

I have had a few bad headaches also! I get pretty bad nausea with it which is tough! Im sorry you got so sick with it! I’ve heard it can cause such bad headaches!

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JeezLouiseNowWhat

I found taking phenergen for nausea helps. I do have bowel issues, but also drink a ton of water because I know that I'll dehydrate easily. I take maxxalt for the headaches. I'm hoping that all of these side effects will diminish with time. Methotrexate gives me the same issues, so I can't say that it is all from the Otezla. I hope that the side effects diminish for you!!

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Siobhan1980

Hi Nicki318 I too get awful skin lesions mainly on my face and upper shoulders in find aloe vera gel really really helps, it soothes them and dries them out quicker, also it's nice to have a break from the steriod cream :)

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Niki318
Niki318
in reply to Siobhan1980

I’m so glad I’ve met someone who also gets them on their face! I thought it was acne for the longest time until I realized they were lesions! It’s such a struggle! I rotate between DUAC and steroid screams!

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Siobhan1980
Siobhan1980
in reply to Niki318

I dont hear often about lesions on the face and was beginning to feel like the only one :(

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Frustrated2
Frustrated2
in reply to Niki318

Niki318 and Siobhan1980

Have either of you had the lesions cultured by a dermatologist ?

I have them as well and am waiting to see what the culture comes back as.

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Niki318
Niki318
in reply to Frustrated2

I have not yet but I plan on it this month and I am curious to see what it comes back as!

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JeezLouiseNowWhat

I get them along my jaw line, lipline, on my stomach and thighs. And pustules on my back... is this kind of normal? It is getting better, with the Otezla, though!

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Siobhan1980

From what I see people talking about on here it seems pretty normal to me yes. Mine are all along my jaw line too :(

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Niki318

I also get them on my thighs and stomach and face! And even my hands! Otezla is for sure helping me a lot!

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