Misdiagnosed

Yes, you read that title right. I just got word from my Rheumatologist and Dermatologist that I was misdiagnosed! (This is a good thing) Let me backtrack for a minute...

I was diagnosed four years ago with Behcet's by my OB-Gyn and a Dermatologist, that diagnosis was confirmed by my first Rheumatologist. I was put on Hydroxychloroquine pills twice a day. Due to insurance changes, I had to change Rheumys. My 2nd Rheumy didn't even question the fact that I had Behcet's, just told me to keep doing what I was doing because it seemed to be working. Then, about six months ago I began having flare's...every month. Rashes on my skin, ulcers all over, you know the drill. After getting fed up that I couldn't get an appointment with my Rheumy, I scheduled an appointment with a new Rheumy - Dr. Tan at the UT Med Center in Houston (he's amazing btw). By the time he saw me I was between flares, but I told him my history and he added Colcrys to my Hydroxycholoroquine. Colcrys is a gout med that is supposed to also help decrease the severity of ulcers (skin and mouth). He also took me off Prednisone and gave me Methylprednisolone because I told him I felt the Prednisone never helped.

Then last month, May, I had my 4th or 5th flare in 6 months. I called Dr. Tan and he got me in immediately (this was the first time he was going to see one of my flares). At the appointment he made it very clear that the rash on my skin was unlike any rash he had seen on other Behcet's patients, and thus he wanted me to go see a Dermatologist he worked with (also in the UT Med Center). Unlike the other Rheumy's who were pushing me to start Imuran any time I would have a flare, Dr. Tan wanted to double check the diagnosis (with the help of the Dermatologist) to make sure that I did in fact have Behcet's. Thank goodness he did, because what I have been living with for almost six years has turned out not to be Behcet's, but Erythema Multiforme.

It's a Roller Coaster of Emotions...

Just to update you, for those of you who are just jumping on-board, I had my first flare in three years back in January of this year. It was a fairly minor flare and consisted of  a couple dozen ulcers on the inside of my lips. It still was very painful, of course I was tired, and my mouth looked awful, but it was nothing compared to what it was three years ago when my immune system was out of control. THEN in February I battled some upper respiratory infection basically all month. Granted, I was much better off than some people in the office - we had people with Pneumonia, Bronchitis...it was crazy in our office!
THEN in March I had my second flare. This time my mouth wasn't affected, but my skin was and this was the worst case of skin lesions I had ever had. I looked like I was covered in large chicken pox. They itched and were painful just like chicken pox too!

Now it's mid-March, and I finally physically feel like I am progressing to some sort of normal state. My upper respiratory infection is gone, I'm not fatigued, and I haven't had any more sores pop up on my body in the last week. But emotionally, I'm a roller coaster of emotions. I've never been sick for such a long period and I'm a little depressed because of it.

That was a Long Hiatus!

So good news, bad news, then more good news...
Good News: For the past three years I have been (pretty much) flare free!! I've had a couple minor "was that a flare or wasn't it?" moments, but overall the Hydroxychloroquine my rheumy gave me seemed to help manage my symptoms.
Bad News: In January of this year I had my first official flare in 3 years, this one consisted of mouth lesions and skin lesions on my arms. THEN in March I had another, and although this one did not affect my mouth my body was pretty much covered in ugly spots.
Good News: This reminded me that I had once started a blog, with the best intentions to provide the world information about the unpredictable symptoms of Behcet's, new research about Behcet's, and first hand experience from a typical female living with this disorder/disease.
So, I'm back! :)

So why, after being under control for three years did I have two flares in a row? I have a couple ideas: