Behcets Disease

[dougperzyk]

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]

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]

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]

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]

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]

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?

 

[dougperzyk]

The clots were a part of Behcets. I went through more tests than I care to name to rule out anything else. Behcets was all that was left and it fit due to the mouth sores.

The FAA took 12 weeks to respond. My AME actually called them yesterday. He said they did not see my Behcets as being under control. That worries me a bit because I have been stable for two plus years with no mouth sores or blood clots. Not exactly sure how that can be viewed as not in control.

 

[CICSchmidt]

The clots were a part of Behcets. I went through more tests than I care to name to rule out anything else. Behcets was all that was left and it fit due to the mouth sores.

The FAA took 12 weeks to respond. My AME actually called them yesterday. He said they did not see my Behcets as being under control. That worries me a bit because I have been stable for two plus years with no mouth sores or blood clots. Not exactly sure how that can be viewed as not in control.

I saw the AME today and unfortunately due to the Behcet's it is being deferred to the FAA. My AME is going to help me prepare notes to give to the FAA (Doctors visit notes, doctors letters regarding my condition, etc). Any other advice you can give right now? All my ulcers are under control now with approved medications so it just comes down to their interpretation of the disease.

 

[Deleted member 27505]

I truly admire both of you guys for maintaining your passion, enthusiasm, and drive in the face of your adverse conditions. Well done.

 

[dougperzyk]

I saw the AME today and unfortunately due to the Behcet's it is being deferred to the FAA. My AME is going to help me prepare notes to give to the FAA (Doctors visit notes, doctors letters regarding my condition, etc). Any other advice you can give right now? All my ulcers are under control now with approved medications so it just comes down to their interpretation of the disease.

Well, now you play the waiting game. Honestly, this disease is like a curse. A very rare curse. A curse I would not wish upon my worst enemy. The worst part about this disease is that very few doctors even know what it is. Every time I have to see a new doctor and disclose that I have Behcets it goes into 50 questions about the disease. I hate to say this but you're almost like a freak in an olden day freak show. Everybody wants to come and look at you and poke and prod. The last new doctor that I saw actually dragged in all of his interns to ask me questions about Behcets. Now flash forward into our current situation. The disease manifests with certain characteristics that have some commonality like the sores. But even then they can show up in different levels of severity and in different locations. Behcets "can" cause other issues as you well know and it's defined in the medical books that way. So if you're the doctor that has to clear someone to fly that has a condition that could "potentially" cause vision and/or mental issues, to name the two most severe manifestations, and have not taken the time to research the condition to a point that you are well familiar with the disease, what would you do? I'd say with a high degree of certainty you would just deny the medical while of course protecting your own career. I think that's where we are both at and I hate to say it. This disease just isn't that common here in the states and it's just easier and faster to hit the application with the big old "DENIED" stamp and move on.
I have sent my letter and supporting documentation (physicians statements) in to request reconsideration. I've read that the FAA has no defined time frame in which they have to respond to requests for reconsideration. So, back in the waiting mode for me. I'm hopeful that they will take a deeper look and perhaps call my treating doctor. After explaining all this to him he told me he did not have any "test" he could do to show my Behcets is in control. It's a rather "subjective" disease with no conclusive 100% accurate test to say you have it or not yet alone to prove it is or isn't in control. It's just what symptoms fit the condition. Maybe I don't have Behcet's and that is the direction I am going to pursue with my doctors. I've read more about this disease (and autoimmune diseases in general) than I've read on anything else in my life. All are cause by toxicity at the cellular level and your body responds by "attacking" this toxicity. Unfortunately we live in a very toxic world but eliminate the toxicity and eliminate the "disease". Start asking your doctor about this and watch how quickly they change the subject. "Oh no", they say, "just try this new medication, there's no research to support what you're saying." Maybe that's the problem.
Well, sorry to be so "wordy". I wish you the best in health and you're pursuit and love of aviation. Please keep me updated and I'll do the same.

 

[CICSchmidt]

Thanks Dougperzyk. I visited my Dermatologist yesterday and we talked in detail about the diagnosis. It was purely based on the skin lesions and ulcers and not much else. No blood work has ever come back saying I have Behcets, it was just the closest diagnosis she could come to that covers the skin stuff going on with my body. She is going to write that in her notes that my AME will be providing the FAA. Here is hoping my Rheumatologist, someone who has been much more hesitant in naming a disease, will write something positive as well when I see him in 2 weeks. I hope that what both of them say will help persuade the FAA in approving my Class 2. I'm very thankful that my AME said he will read what they write and will make sure that it is in favor in setting me up for success.