Hi, my name is Robert. I’m 41 years old and have Ankylosing Spondylitis (AS) and Rheumatoid Arthritis (RA). I have read most of the IATFOAS stories and learned more about your struggles as I can identify with many people. OK, here is my story.
I was about 20 years old and living in my TKE Frat room bed when I woke up and could not walk or hold up my weight. What the hell!?! I had not drunk that much the night before. I had to have my girlfriend at the time rent some crutches until I got “better” and could walk on my own. I saw 2 orthopedic surgeons who took X-rays and concluded that I had some “normal” arthritic activity in my hip sockets and I was ok and told to go away. The pain went away and I planned for eventual new hips sometime down the road. Life was good but I did not see what was coming.
I would continue to have periodic episodes of flares that seemed to happen in the fall timeline and it was hard to explain as I did not know what was going on. I was told to take some aspirin as the docs did not ask the right questions. My “hips” would hurt and I would see another orthopedic surgeon and would be given the same useless bit of advice of some wear and tear in the sockets and BTW you need to lose weight.
I was able to train and complete a full length (140 mile) Ironman race in 2006. A year later I had an episode of Iritis, but the eye doc did not know what my regular doc knew and I did not know to tell each them of this issue (who knew?). The flares intensified until I had a four legged walker and then fell flat on my face in front of a top notch orthopedic institute in Naperville where I was confined to a wheel chair which was emotionally devastating. After a full day of tests the last orthopedic doctor concluded I needed to see an RA doc as they admitted they had no idea of what I had but knew the minimal wear in my hip sockets were not the reason for the excruciating pain that I was in. To their credit, they got me in the next day to see Dr. Robert Carpenter who was phenomenal! Dr. Carpenter quickly put together the pieces of my 17 year saga and ordered the tests which confirmed the AS but no RA. I was started on the usual NSAIDS which of course had no effect. The insurance company did agree to pay for Humira which turned about to be a miracle drug for 3 years but of course I grew resistant to it. In 2009 I completed my last Ironman and I “retired” as my hobby required three knee surgeries.
In 2010 I got bad again (hands, hips, knees, ribs, lungs etc.). I was on double doses of Humira and insane amounts of Prednisone which gave me no relief. My new AS doc did more tests and it turned out that the RA was not prevalent. Dr. Wally put me on Methotrexate (6/week) and changed the injectable to Embrel. In a month, I was back to a new normal which is still painful but manageable. I also developed painful Plantar Fasciitis so I got proper ortho inserts and learned to take care of them.
I am going to take the advice of those who suggested the LSD but first, need to lose that weight so off to the juicer I go. I want to thank the founder of IATFOAS as I feel there is a group of people that I have something in common. I don’t want this “relationship”, but I am glad to hear of good ideas and to know that I am not alone.
Thanks for reading. Robert
Wyoming United States Of America