Dave, keep working on those drugs! Please!
My father has uncontrollable RA. In four years he went from perfectly healthy to totally disabled. He's been on Embril, Humira, and all sorts of other stuff. Kaiser was basically letting him die. The parents changed insurance and found a decent RA doc in SBA. That guy has him on a combo of Humira, methotrexate, and lots of other stuff. It has only barely slowed the disease. The slowing is remarkable from the uncontrolled failure he was suffering. He's walking again, for the first time in a year. Avoid prednisone (sp?) if at all possible, the side effects can be devastating (want a Colostomy bag?) and mask some of the warning signs of disease progression.
Suggestions:
Get your financial and life affairs in order. If the disease is not controllable, you won't find out until it's too late to get yourself in order. If you're building/buying a home, plan for a wheelchair and accessibility. Get 6-12 months of money into easily accessible savings NOW. It takes that long for social security or state disability to take effect. If the diagnosis is still pending, or not, get long-term and short-term disability insurance, medical insurance. along with credit card insurance if you carry a balance.
Get your CFI (if not already) and at least one type rating if you don't have to hours to meet the 'all simulator' option in the regs. This is the bet that will keep you working and flying long past the time where you could effectively manipulate the controls full-time. Learn to use voice recognition software and pen tablets for computer input. As stuff stops working, keep coming up with new ways to stay working. It's not neccessarily a job but ways to stay occupied.
It's also possible to have some signs and be 'in remission' for years where the pain is there but doesn't get any worse. But, if the disease 'leaps' i.e. you lose a chunk of ability in a short time, you'll be prepared.
Visit
www.spondylitis.org and
www.arthritis.org for more information on RA and other similar diseases. Also, PM me and I'll send some more info not fit for the public boards.
Good luck.
Fly SAFE!
Jedi Nein