Living with Behcet's Syndrome for 22yrs

[FRNSCGRL27]

Hello every one, I live in the U.S.A. I have a great doctor. I was diagnosed @ 18 yrs old in November 1995. Nobody knew what I had or what to do until I found a new Dr. just being hired by my insurance. His name Dr. Andrew Nguyen. The first thing he did was start me on Remicade infusions on February of 2006. Five years later we added I.V.I.G. until this December 2017. January 5, 2018 I start a new medication called OTEZLA (Generic apremilast). Which here in the U.S. has had great results with sores. My Dr. has 2 patients with Behcet's, I'm one in Riverside County CA and he has another in the neighbor Orange County CA. His other patient has responded very well to this treatment and has already had a child. I met this Dr. a little late in my disease and had already had a hysterectomy. But I'm very optimistic!!!! Because I went from having 25-50 sores all over my body at one time to now getting less than 10 at once!!! I hope this is helpful to you guys out there. And be patient I still have to teach some Dr.'s in the E.R. what Behcet's is. Just remember they didn't all get A's or B's some got C's and D's. I hope this is helpful to some of you, good luck.

[jzeis]

Can you please provide his contact info for appts? Is he a rheumatologist or a different specialty? Thanks!

[mamaphilosopher]

I'm so glad I saw your post. Like you, I have had to explain what Behcet's is when I visit urgent care centers and the ER. I am currently being treated by specialists in Loma Linda and would highly recommend any one of them if anyone else ever needs a referral in Southern California.

It sounds like your course of treatment is working out so far--fingers crossed and warm thoughts to you!