You have stated in a number of posts that you know, met, or have talked to many AS patients who have had negative outcomes. I find that fascinating as I have 50+ combined patient years (20+ for myself and a combined 30 for my kids) of sitting in doctor's offices, infusion centers, hospital's, and pain treatment programs in multiple states and I can't claim that I have met very many people in real life (outside of my family of course) with AS, let alone people with severe disease and poor outcomes. Regarding negative outcomes on biologics, it would be helpful to know a bit of the history of these drugs. Enbrel was the first biologic drug to receive FDA approval to treat AS in June 2003. Remicade received approval in December, 2004 and Humira in June, 2006. A patient could only have taken those drugs in 2000 if they were enrolled in a clinical trial. (I was enrolled in a clinical trial for Enbrel.) It would be unusual to meet a patient who was involved in one of the clinical trials in 2000. It would be even more unusual to know multiple "people" who were trial participants who remained on the drugs with no efficacy.
You say "leave the doctors out of this one" but based on your multiple statements that really is not possible. You say your doctor has no,plans to but a "severe AS" patient on biologics. That is not standard of care. You say you have met many people with AS (presumably in your doctor's office) that are in severe, unremitting pain. That is not the norm and would most likely be due to misdiagnosis or mistreatment. You say that you know people (plural) that were on biologics in 2000 (unlikely) to no effect. This is also not the norm and would lead a reasonable person to wonder about the diagnosis and treatment provided by the doctor.
ETA: I apologize for the post being broken up in this manner. It was the only way I could get it to post. Otherwise I was just getting empty dialogue boxes.
Last edited by NotMeToo; 10/18/17 07:34 PM.