Help! New diagnosis of Bechets disease

[crperk]

I am recently diagnosed with bechets by my rheumatologist. I also have psoriasis and PsA. My dr prescribed Otezla 30mg 1 x a day, after 2 months she increased my dosage to 2x a day. It improved my mouth ulcers but taking twice a day, I had side effects. She stopped my MTX and I also take Orencia infusions and celebrex. Does anyone find taking Otezla is helpful for bechets or arthritis, or do you also have the side effects?

[KittyJ]

There are a couple of Behçets groups on here, in case you haven’t found them, they might have more specific help. ( not saying you shouldn’t ask here too 😊)

[crperk in reply to KittyJ]

Thank you. I will try to find them 😃

[KittyJ in reply to crperk]

Let me know if you can’t and I’ll put some links up 😊

[crperk in reply to KittyJ]

Thank you. I did find a couple of the links.

[Maggsie]

I was pleasantly surprised to read your post and did some research on Bechets disease. I have a lot of those apparently disparate sumtoms which no-one has ever been able to piece together other than to say it might be PsA. My eyes are very inflamed and have lots of red veins, I have lesions which were definitely not psoriasis , suffer with mouth ulcers and have significant joint and muscle pain even though my RA appears to be under control. I'm currently taking 20mg sc mtx and tcz 162mg sc once per week.Thanks to your post and KittyJ's reply I'll do some further research,!

[crperk in reply to Maggsie]

I think many of us are going undiagnosed and actually have behcets disease. Mine started with the ulcers, mouth and genital approximately a year ago. Rheumatologist took me off of MTX, didn't help. Took me off of cardio b folate once a week to methyl CpG folate everyday, didn't help. Prescribed Otezla 30mg 1 x day. This helped my ulcers and took the count down to 1-3 ulcers. I felt I was doing well on the Otezla at 1 a day for about 5 weeks but when increased to 2 a day started having nausea, no appetite and diarrhea. I decided to go back down to 1 a day and I am doing better with the side effects but still have them. See my rheumatologist in a couple weeks. I now have another symptom of behcets and that is the bright red round sores on my legs that are unlike psoriasis. I think they are vascular nodules. Let me know if your research turns up any medications that help with behcets.

[Maggsie in reply to crperk]

Thanks for your rep,y. I'll let you know if anything turns up.

[crperk in reply to Maggsie]

great. thx.

[IsabellaAugust]

Thank you for sharing. I was also prescribed otezla for my Bechets but i was too scared to take any new medications. Still struggling with trying to find a good cure.