Hey folks, I hope you are all doing well.
About a year and a half ago I was diagnosed with Behcet's. I was really fortunate because my doctor was well versed in the condition even tho it is very uncommon. He was my PCP and sent me to a specialist in my area. She threw me on 40mg of prednisone and 2000 mg of cellcept. All symptoms of the disease vanished. Then I noticed my eyesight changed, after talking to a great eye doctor he pulled me off the prednisone because it hurt my vision. My vision got a little better but my prescription changed. I still have 20/20 after contacts thankfully. I had the same prescription for over 15 years at -1.75 now its -2.75.
So I went to my specialist who didn't seem to care that I came off the meds. After a few months I noticed I didn't heal well from simple cuts and they looked pinkish for ages before they went away. I spent the next year asking my doctor to take me down on it or off it. I stepped down on it without her consent to 1000mg which helped me heal better, still lite to no Behect's symptoms only ulcers if any. Well I guess I got on her nerves, she told me to come off of it if I want but that she wouldn't be responsible for anything that happened. I then asked how I should come off of it. She then said in a rude tone, just don't take it more and see what happens. Which seemed odd to me since it took me 6 months to get to the dose I was on.
I lost all faith in this doctor. They even threw a fit when I asked for my records. When I told them I wanted a second opinion she told me no one would try anything else because I was on the right meds.
I have a very supportive family which is the best. We decided to make it a vacation and go to The Mayo Clinic in Florida. In September 2015, Hopefully my PCP will take over my care after that because I can't work with this specialist anymore.
I've been a member on here a while and I feel like my condition is very lite compared to most of everyone here. BAD Mouth ulcers and occasional bumps on my legs were about it. I feel like the meds I am on are too risky for someone my age (28) I am able to work out daily, hold a full time job, college and 3 kids. This disease won't knock me down. But I fear that with a little time drugs like Cellcept will.
What do you guys think? Am I right to search for a better med solution. Is Mayo good at this? I've also herd that this can get better in time. Really the first 5-7 years are the worst. I've read a ton of material. I sure don't feel like I have a nasty rare condition. For those who don't have it bad, do you just take meds during flair ups? Or are you on low doses?
Your opinion matters to me. I am still new to this.