Mouth ulcers

[Torquoise]

Hi I just started otezla today. Has anyone had mouth ulcers for 8 months with no relief. I am so tired and frustrated.

[JudeRh]

Hi Torquoise,

Really sorry to hear about your mouth ulcers, I can feel your pain.

I have them for 6 years straight and up 26 in my mouth at one time.

I was diagnosed with Behçet’s in 2016 and the doctor put me on Colchicine - it changed my life!!

I now get them only often and when I do it’s only a few and I use a steroid spray which is usually used for Ashma the brown inhaler. I put that on them and they go within a couple of days.

Ask the doctor about the medication and see what they say. Good luck 😊

[Frustrated2 in reply to JudeRh]

JudeRh~ I’ve never heard of an asthma inhaler that would work on them. I always had my doctor prescribe Magic Mouthwash which is lidocaine/Benadryl and Milk of Magnesia. Usually done at a pharmacy that does compounding.

It would at least allow me to eat and drink.

I would love to know what the inhaler is since there are so many out there.

Thanks for sharing what’s worked for you.

[Shari1218]

Hi there, my experience with mouth ulcers are eerily similar to Jude R’s, constant mouth ulcers for years and at least 15 ulcers but my dr put me colchicine also and I have not had an ulcer since about 1 week after starting that med. Please ask your dr about it. You have 2 testimonials about this wonder drug for gout that takes away Behcets mouth ulcers too! Good luck my fellow Behcets Warrior!!

[Number4]

My mouth lesions wax and wane and until very recently have been mostly a mild distraction for months. That's not to say they haven't also been very bad. Conversely genital lesions have been an ongoing and very real problem for 18-20 months. At least when the lesions in my mouth bothered me I lost weight. Up until two weeks ago food was a comfort even if the gained girth is not. At least know that you are not alone in your suffering nor the duration. There are a few meds that have been of great service to some on this forum. My you soon be numbered with those.

[Frustrated2]

Hi Torquise

How are you tolerating the Otezla?

[Torquoise in reply to Frustrated2]

Hi . so far I've had some nausea but nothing I can't handle. I'm hoping it helps me , can't tell yet. If you could please say prayers for my son he is very sick in ICU at hospital... Long story. How are you doing

[SCMW]

Yes, I put up with a long period of ulcerated throat and tonsils - colchicine cleared this up in 2 doses. Also Triple mouthwash which you have to make up, comprising betamethasone, doxycycline, nystatin. Is used twice a day preventative and four times if active. Also synalar ointment for genital area. Don’t suffer, hope this helps.

[maddietheriot]

Ive been on Otezla for over a year no more mouth ulcer

[ydt1983]

Hi, I was also in the same boat as you. Suffered with constant mouth ulcers from being a child which worsened with age. Eventually diagnosed with Behcets and put on colchicine- it has changed my life! I also have the brown steroid inhaler to spray in my mouth when I do get an ulcer.

Definitely see your doctor - good luck xx