After too much digestive tract trouble with Colchicine, my rheumatologist and I have decided to eliminate meds completely, and just treat the symptoms (mouth ulcers) when they appear.
I thought I would be in a whole different nightmare, but it turns out, I'm doing just fine. I have a steroid paste to use when the ulcers come (surprisingly - they haven't, at least not in any number that would cause concern). My rheumatologist thinks that I have a pretty mild case of Behcet's. I am hoping that I'll outgrow it -- like I outgrew PMS. That's probably silly, but stranger things have happened to my body.
At any rate, I stress the importance of working closely with your rheumatologist to stay in the best of health. Don't ever believe that because you have X, you should be taking X. You should be listening to your body and paying attention to symptoms, triggers and your overall health. Had I done so earlier, I probably wouldn't have had to have an appendectomy last summer.
To manage Behcet's disease, work closely with your physician. Pay strict attention to your dietary triggers. Get exercise. My Behcet's symptoms are closely related to my overall health. When I catch a cold or get the flu, Behcet's symptoms flare. Stay in good health and don't get discouraged if you have an episode of not feeling well because you're having a Behcet's flare. There are plenty of remedies to help get past the symptom phase. If your rheumatologist is against steroid paste, I think its time to shop for a new rheumatologist. Or talk with your dentist.
Regardless, my health has been holding stable since stopping the medication in January. I feel great. I will be monitored a bit closer; have to see the rheumatologist once every six months now, instead of once a year; but not taking meds makes me happy. I'm down to one pill a day for hypertension. Not bad for someone my age.
