Email me at firstname.lastname@example.org if you have Behcet's or know someone with it and I will forward the email to her.
In talking to G, she mentioned something interestingthat might help others who were in her position. Her vaginal ulcers were diagnosed as herpes abut she never tested positive for herpes. For years she was given drugs to treat the herpes but because she did not have herpes, the drugs did not help her at all. If this sounds familiar to you, you may want to check out the American Behcet's site. Also, ulcers can occur from the mouth to the colon causing bleeding in the intestinal tract (L PLEASE CHECK THIS OUT!! SEE SYMPTOMS LIST)
I developed chicken pox at age 27 (18 years ago) and I developed my first flare of a single sore (vaginallly) that ended up having to be lanced. I didn't have many flares at first but as the years passed they became more frequent. The last 6-8 years have been the worst. My doc at the time decided I had genital herpes. (Not the sexually transmitted kind but the canker sore kind). Type A I think ??? I have been treated for the last 6 years with Acyclovir (zovirax). To no avail of course. Turns out that my tests for herpes did not show anything solid to justify treatment. Years ago I explained to one the many docs at Kaiser about the sores I get on my shins and in my jaws and he said that it could be blah, blah, blah, but I am sure you don't have that. I can't remember what he called it. Makes me wonder if this couldn't have been cleared up then.
Over the last 2 years I have had to miss some work over all this and I missed 4 weeks of work in the last year because I began developing fevers with a flare. The last 2 years I have not lived without a flare. It got to the point where I was just waiting to die and be done. Not only is there so much physical agony, but it also wears on your emotions. You feel isolated, diseased, untouchable, ugly, stinky and down right repulsed at the idea of yourself. And of course if we feel like that so does everyone around you. At least that what I often think. It has pretty much taken away part of my relationship with my husband. Although he is very compassionate, there is no way he can fully understand what that effect has had on me.
My behcet's was kindof accidentally diagnosed. (A blessing in disguise it what I call it)
My sister finally got me to switch to a different gynecologist and offered to go with me. Two days before my appointment I had another flare. This time I developed the sores everywhere including my shins. I decided I should shave my legs before my appointment and ended up causing cellulitis which is a bacteria entering the skin through a open pore or an open wound. My infection got so bad that I could not walk. I went to the emergency room and they decided to admit me on the grounds that they could not control the pain. Once at the hospital, I was being treated with two different antibiotics and plenty of good pain medication. Morphine being the best until it made me sick. I spiked a fever and had yet another flare while I was hospitalized. My doc was going to send me home, (you know, the hurry up and get them out story), and I pointed out that I was having another flare and that the sores were on the opposite leg as well. Ah, the light went on and the rest is history. He got the on call Rheumatologist, who I wish was mine, and she took one look at it and knew what is was. She normally doesn't do vaginal exams but wanted to be sure so she proceeded with the exam. She was so confident with her diagnosis that she ordered and brain scan to be sure that there were no lesions there. She took me off the zovirax and started me on prednisone and by the next morning my fever had broken and my sores were beginning to heal. Talk about being on a high. I suddenly thought of prednisone as my happy pill. Finally I could begin to have a life again. Except that I didn't think I would be on this for so long. I suppose it really hasn't been that long considering how long I have been dealing with this but it driving me crazy. I feel very blessed to have finally been diagnosed with something. It's just been an emotional roller coaster. It's true though that the only way they can diagnose this disease is to go by all your symptoms. There is no actual test that can determine that you absolutely do have it. Sometimes I still feel like it a crap shoot trying to find what will work for me.
I am actually on 20 mg of prednisone. Every time I try to ease off I have what they call a flare and have to go right back up again. I'm like you. I am small boned and have never really been overweight. Just out of shape. ha-ha. Now though, I am gaining weight and I have not increased my food intake. In fact I am trying to eat less. I too am very cranky and teary alot. On top of that I feel as though I feel sorry for myself too much because of it.
With the prednisone, I am also taking 10mg per week of methotrexate, which is actually a chemo drug of some sort. It's supposed to slow the immune system somewhat, I guess. My doctor tries to be thorough. Not too many doctors are very familiar with Behcet's and I belong to Kaiser so it's hard to find someone who actually specializes in the disease. Along with the prednisone and the methotrexate I take 3mg of Folic Acid daily and Prilosec daily. I am beginning to feel like a walking pharmacy. I will take 2 months or more to know the methotrexate will work and I have only been on it for 6 weeks. I tried the least toxic drug first (colchizine) which of course did not work. The info sheet on the methotrexate says to contact your doc if this or that occurs, in my case it threw me into menopause. Now instead of trusting that I know my own body he's sending me to an OBGYN. Can't wait. The sores are better but only if I'm on a high dose of prednisone. However, If I go walking, bike riding, clean the house or just break a sweat for some reason I will still become tender in all the areas that the sores occur.