Day 32. Dr Yazici

I've been waiting a month to put that name in the title bar and it was well worth the wait because his reputation held true today. I had my appointment with him at the Behcet's Clinic at NYU today. I was lucky enough to have my amazing mother and sister accompany me in the exam room to meet with the doctor. Thank you Gina for recording the appointment on your phone. Mom took notes and paid the bill, thank you mom, I love you!

Here's the briefing:

I'm not taking enough of the Imuran to have it be beneficial and will be going from the 100mg's/day that I'm currently on to 175mg's/day. Increasing to 150mg's for one month and then on to the 175. I will need to do this for one year. Normal treatment is a 2 year period but he's satisfied with me taking a break in 1 year to get pregnant although he did emphasize that it may mean going back on it after evaluating my symptoms. 66% of the people that go on the 2 year treatment are symptom free forever when they come off, 33% are not and have to go back on the medication (depending on the severity of the symptoms that return). But, this is all at the mercy of my lungs. If in 6 months my PFT shows that they are worse we will revisit this treatment plan. If it shows to be improving then we will continue on the goal to stop the meds in 1 year for a baby break.

My home based Rheumie didn't do the correct genetic testing and it will need to be done again. He also didn't do the pathogen skin test so Dr Yazici did it today. I have to take pictures of the four skin pricks he made on my forearms in 48 hours and email them to him along with the new gene tests.

The following is why we flew all the way to New York to see this doctor:

"It is Behcet's"

"Behcet's is different in that it gets better with time especially in females that don't have eye disease" (we actually whooped, whistled and high-fived eachother when he said this because I don't have the eye disease associated with Behcet's)

"infection can tigger it" (just a little tidbit that I didn't know)

"Behcet's is pregnancy neutral" (my chance of having another still born is the same as anyone else)

Lungs...

"if it was aggressive it would have got worse in the time period that you were having other manifestations"

"it might be that something happened and this is a left over from that but it would be hard to make that argument since your CT scan was normal"

I have sooo much more to say but can't type anymore tonight. I'm feeling on top of the world today and loving NYC!!!