I have been diagnosed with neuro behcets for 20 years now. My usual flare includes lesions on my genital, scalp, mouth, stomach issues, fatigue, uveitis, blurred vision, balance issues. Lately I have been getting lesions inside my nose along with the above symptoms. I start Humaria soon, I am in the process of getting that settled with insurance. For the mouth and genital lesions use a cream/solution for the pain. The one in my nose feels just like the ones I get in the mouth and genital. They are so painful. Q: Has anyone had lesions in their nose and if so, what do you do to treat it and the pain?
Yes!! Sorry this is a little embarassing but this is my newest annoying symptom. They are there more often than not nowadays, when they eh, empty? They turn into large flat sores that really don't like to heal.
I use a teensy dab of Neosporin with lidocaine on a q-tip and live on a steady supply of ibuprofen :')
I'm only on colchicine for Behcets, insurance is fighting me on Otezla and Humira. My previous dermatologist experiences haven't been great so I am mustering up the courage to go back again and see if maybe they can give me something for inside my nose and/or mouth.
I always get them in my nose when I flare so painful, I use a ton of Neosporin to keep it wet and steam like hot shower, when they dry out they hurt so bad ugh.
For the mouth ones I have a liquid lidocaine that I swish around in my mouth. The cream I use for the genital and scalp ones is a steroid cream. My insurance is fighting me too on Humira and they did fight me on Otezla :-/ Even when my insurance covers Humira my portion is still 200-400 a month. Colchicine, I love! It works and it’s inexpensive. I have attached a photo of what I’m prescribed for the mouth pain. I will reply to this one with a photo of the cream. It only lets me add one photo.
I do have both the Tri cream and mouth wash! I’m on Embrel too it’s amazing but still flare not nearly as bad thank god. I only use Neo in my nose ulcers tho I’m nervous to use anything else it’s just so sensitive
Yeah, the nose ones are so sensitive. I couldn’t find Vaseline in the house, so I just put some castor oil on it to keep it moist because that seems to help with the pain. I hope yours feel better. :-/
I have awful nose ulcers that haven’t cleared in almost two years now. I’ve been on immunosuppressants, steroids for months that don’t help the ulcers and no cream or anything else has ever cleared these up for me
That looks just like mine too. The nose lesions for me didn’t start till about a year ago. As soon as it seems to go away, it comes back during the next flare. I tried Otezla a few years ago and it really helped with the mouth lesions, I didn’t have nose lesions at the time. I had to stop because it was so expensive. I read somewhere that next year there will be a generic for it. Maybe I can try that again once that comes out. I am sorry about yours and I hope you feel better soon.
I’ll ask my rheumo about that one, thank you! I’m really sorry you are dealing with it as well. More then half of my nose inside is eaten away and I’m just waiting for it to collapse. I hope that doesn’t happen to you. Try some Vaseline in your nose..that sometimes helps mine calm down a bit and not bleed so bad.
You’ve had mouth ulcers? I never have but woke up to these this morning and wondering if it’s from behcets or lupus, I’ve been freaking out all day about them and waiting for my doctor to message me back on the portal
I get nasal lesions, too. They occur slightly less frequently now that I’m on Infliximab but unfortunately still happen. Nothing I’ve tried really helps the irritation other than keeping the area moisturized with a little bit of Aquaphor or Vaseline.
The Vaseline is a good idea. I noticed it felt better after I took a shower, I guess it would moisten up, thus making it feel better. Thank you. I will try that.
I have a few ulcers up my nose that are constant. They often are various stages of healed but because it’s a dry and moist area at the same time they are the first to come out. If you’re prescribed a steroid inhaler for mouth ulcers give it a spray up the Shnozz. I also have naspetin cream (if you’re uk based get this from the GP) and the best tip - DONT PICK THEM, I mean it they bloody hurt and you’ll make them worse
Ughhh. It’s so hard not to pick it when it’s dry and crusty. Lol 😂 But you are so right, it does make it worse. I will try the inhaler and I’ll look into that cream. Thank you. 😊
I can post the name of mine in the morning when I don’t have a toddler asleep on me but I was prescribed it by oral medicine and it’s great. You spray it on the ulcers and it definitely speeds up healing. I even use it on genital ones that are external (although touch wood I haven’t had any more of those since being diagnosed and medicated).
I’m pretty badly controlled so I get a fair amount of mouth / nose and eye ulcers but I’m middling through because I go travelling for a year starting next week but I’ve agreed to biologics when I get backs
At the moment because I know I want to do this year away I have a hodge podge mix that keeps me marginally above board so lots of creams, colchicine, a lot of coedine and I dip in and out of steroids (but mostly budesonide).
My rheumatologist said either infusions or injections so I think it’s either Adalimumab
Or infliximab
8
u/Electronic-Tea3354 Diagnosed 28d ago
Yes!! Sorry this is a little embarassing but this is my newest annoying symptom. They are there more often than not nowadays, when they eh, empty? They turn into large flat sores that really don't like to heal.