Behcets Disease

dougperzyk

New Member
Going to pretty safely say "most" doctors don't even know what Behcets disease is. That's my experience anyway. So, I have Behcets. Main two symptoms for me are horrible mouth ulcers and a hand full of blood clots. However, now that it has been FINALLY diagnosed and is being treated, I am symptom free. No clots or mouth sores for two years. I have a hematologist who has me on Xarelto to safegaurd against anymore blood clots and a rheumatologist who has me on Otezla for the Behcets. Otezla was just recently approved by the FDA and is currently the only drug here in the US approved for the treatment of Behcets. So I started the ball rolling for getting my class three medical back. My doc said he was about 75-80% confident that I could obtain a medical. He said the blood clots were not going to be a major issue but the Behcets might be just because it's pretty rare here in the US. So... Thoughts and or suggestions? Currently my doc is gathering my medical history.
 

FlightSurgeon

Well-Known Member
Hi Doug,

Your application will likely be deferred by the AME to the FAA. They will expect you to supply status reports and possibly medical records/labs from your treating physicians. I agree that the likelihood you can obtain a medical is good, although you may be placed given a Special Issuance that requires you to provide the FAA with updates on your condition on a more frequent basis. Keep us posted on your progress!

Best Regards,

Aaron Florkowski, MD
FAA designated AME
www.kansascityame.com
 

dougperzyk

New Member
Thanks for the reply Aaron. Yes, I was deferred to the FAA. My AME and I discussed this prior to moving forward. We gathered all of my medical records and he (my AME) prepared and sent them off to the FAA. Now it's just the waiting game. Hopefully it does not take to long. I would be comfortable providing the FAA with as many updates as the feel is necessary. I'll post updates as things progress in case there is anyone else out there with Behcets has any of the same questions and concerns.
 

CICSchmidt

New Member
Thanks for the reply Aaron. Yes, I was deferred to the FAA. My AME and I discussed this prior to moving forward. We gathered all of my medical records and he (my AME) prepared and sent them off to the FAA. Now it's just the waiting game. Hopefully it does not take to long. I would be comfortable providing the FAA with as many updates as the feel is necessary. I'll post updates as things progress in case there is anyone else out there with Behcets has any of the same questions and concerns.
Hey Doug, like you I also have Behcets. I'd like to talk in detail with you about your outcome and what to expect when I go and try and get my Class 2 in December. After years of ulcers I was finally diagnosed earlier this month after a biopsy. My main symptoms are ulcers on my lady bits, however, I sometimes get acne like bumps on my chest, tiny sores in my nose, oral ulcers (rarely), and minor scalp psoriasis. My Rheumatologist and Dermatologist aren't completely sure yet but they think that my IBS (diagnosed in 2010) may actually be what they call “Gastrointestinal Behcets.” I do not have any eye, memory, neurological, or balance issues, which can also be associated with this disease. I've only recently been diagnosed so my doctors are currently discussing how to treat this. Medications they are considering starting me on are .6mg Colchicine (daily) and Humira injections and this is to primarily help reduce the ulcer flares I get down below. I'm curious how similar your symptoms, medications, and how the FAA has gone about your deferral. I really appreciate your time as I am anxious about going in for my physical this year with this diagnosis.
 

dougperzyk

New Member
Hi. Symptoms for me have always been mouth ulcers and blood clots. The mouth ulcers were so painful it hurt to talk or just breath. Thankfully was finally diagnosed after a trip to the ER one day when I just could not take the pain anymore. They admitted me and I spent a week in isolation until they figured out what was going on. They actually tried to discharge me after a couple of days because they couldn't figure it out. I fired that doctor and refused to leave. Long story short, after getting a team of doctors from rheumatology to hematology and even an oncologist at one point, they finally came up with the diagnosis. I've been on Xarelto for the blood clots and Otezla for the mouth ulcers for two plus years now. I've been very stable and basically "normal".

How has the colchicine been working for you? Have you had any blood clots?

As far as the FAA medical goes, I received a denial letter just last Friday. Now I,m in the process of getting letters from my treating physicians stating that I am stable and all of that. I kind of knew this would happen. Behcets is so rare and can manifest in different ways I kind of figured that the FAA would just look at it from a broad perspective where it "could" cause mental, vision, and all the conditions it's known for. However, anyone who studies this curse knows it manifests differently in most every case. My only two symptoms are the mouth sores and blood clots. Both under treatment. Both stable for two plus years with no recurrence. So the FAA took the easy path and just got out the big "DENIED" stamp and moved on. Well, I'm not the type of person who gives up easily. I won't just roll over.

To be continued...
 

CICSchmidt

New Member
Thanks for the update Doug. Both of us are very fortunate that it hasn't manifested into what could be grounding conditions (eye, memory, neurological, or balance issues). Colchicine has reduced the number of ulcers I get down below and helped with the discomfort. I haven't been on it long enough to know what the long term affect of it will be. No, no blood clots - was that part of the Behcets for you or a reaction to meds you were on?

I go see the AME on December 2nd to try and get my Class 2 and am actually reaching out to him before hand to see how he interprets Behcets. Please keep me updated as I will do the same. What was the time span between going to see the AME for the physical and getting your denial letter?
 
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