I was diagnosed as having Ankylosing Spondylits 25 years ago. I was very active and was able to maintain a reasonable range of motion. Two years ago my hands and lower back started hurting to the point where I could no longer be active. After trying many different many different anti-inflammatory medicines (from Indocine to Vioxx) I began seeing a ?pain specialists? and became dependent on various pain ?killers.? Recently, 5 months ago I began trying to be active and have regained some of my mobility but it is torture to force myself to move. I would like to be examined by an expert in Ankylosing Spondylits with an eye towards treatment with Remicade however I cannot afford this treatment without my health insurer agreeing to pay for the medication. My rheumatologist who avoids the issue by saying Remicade is not approved by my disease. I have called the local Arthritis association (New York City) and they have not been any help. Can you help me find the right physician?
Studies with etanercept (Enbrel) have shown that TNF inhibitors are very effective in Ankylosing Spondylitis (AS) and Enbrel will likely gain formal FDA approval for AS very soon. Studies with Remicade are in progress and likely will show Remicade to be effective as well. I would seek the opinion of another rheumatologist. Even if you find a rheumatologist who believes in Remicade for AS, that doesn’t mean he or she will win the fight with your insurance company. Good luck. You might also try to find a clinical trial of a TNF inhibitor for AS in your area that you could participate in.