The more profiles I read on the in Spondylitis Plus and on the Faces of Ankylosing Spondylitis site, the more it becomes apparent to me, how important the right physician is to people suffering from AS.
In my case, finally being diagnosed by a GP in my late 20’s, after having suffered symptoms starting at age 16, and then in my late 30’s finding Dr. John Reveille, one of the lead researchers and practitioners working especially with AS patients, really changed my life.
I grew up in Germany and was actively involved in some sport activity 6 days of the week all through my youth. At 16 I started having the sudden lower back attacks typical of AS after even short periods of playing soccer or running. I visited the local sports specialist doctor, an Orthopedic for several of the pro sports teams in the area, and was diagnosed with everything from misaligned spine to hip dysplasia and more, and I spent countless hours in therapy strapped to one stimulator or another, “treating” my symptoms. Of course nothing helped, and my symptoms got worse over time. In 1986, at age 23, I came to the US, where the warm climate in Houston worked a lot better for me. I still felt like the human barometer, since I could feel every cold front coming 2 days in advance. I spent many mornings waking up, crawling to my shower, spending 20 minutes under scalding hot water to regain some mobility, in order to be able to pull on my socks and shoes. I was still active, windsurfing on good days, trying to work out through the pain on bad ones, realizing that physical activity actually eased the pain some, after you “got over the hump”. I saw several more Orthopedic doctors, Sports Physicians, and Neurologists over the years and the results were no different than before, with some of them doubting my pain threshold, some of them suspecting hypochondria, and most of them throwing a prescription for a muscle relaxer and a pain pill at the symptoms, without ever diagnosing anything concrete.
At the time I was dating Julie, who would become my wife of now 22 years a short time thereafter. She introduced me to her family’s GP, who looked me over, looked at my soft joint inflammation, took X-rays of my spine and hips and took blood for a C-reactive protein test and an hla-b27 test. Once that came back positive, in conjunction with the X-rays showing a fused sacroiliac joint, he finally diagnosed me with AS. I was put on Feldene (Piroxicam), and my symptoms eased dramatically for the first time in years. Luckily my stomach could handle the heavy doses of NSAIDS. I was still stiff in the mornings, but the hot showers only had to last for a few minutes, and for the most part the AS was limited to flare-ups. Those were more common in winter, during the frequent weather changes, and after certain illnesses (I caught a campylobacter infection once from undercooked chicken, that was followed by a flare-up lasting almost 6 weeks). I also narrowed down a connection to eating tree nuts , which is always followed by a flare-up within a couple of days, still.
Now to the good part:
when the Piroxicam was losing its effectivity, and I was having one flare-up after another again, I was referred to a rheumatologist, Dr. John Reveille. He gave me my life back. Not only is he a great rheumatologist, but he is also one of the key researchers for AS, has run several studies and research projects on AS, is the Director of the division of Rheumatology and Clinical Immunogenetics at UT, and is on the Board of Directors of the SAA. After confirming my diagnosis with X-rays and blood tests, he started me on Azulfidine daily and monthly Remicade infusions, which totally alleviated my symptoms shortly after I started treatment. Though we had to fight with the insurance carrier at the time, because Remicade was indicated as a treatment therapy for RA, but not yet for AS, we were successful in the end through a long campaign of letters. I was, for the first time in over 20 years, able to run again, and able to get physically active. What a change! Though my sacroiliac joints are fused, and one of my hips has sustained damage during the years of misdiagnoses, I am running, lifting weights, skiing, and overall probable am in the best physical shape of my life now, at age 52. Over the years I had to switch from Remicade to weekly Enbrel shots, when the first lost its punch. I am taking monthly shots of Simponi currently, since I started developing injection site reactions with the Enbrel.
With the right diagnosis and the right combination of drugs, this disease and its nasty symptoms are treatable. It is paramount, though, to find a physician, who is an advocate for you and who will fight this disease with you. Aside from the physiological benefits of overcoming the frequent flare-ups and getting rid of the stress on your body, caused by the constant inflammatory action, the mental aspect of being understood, properly treated and nearly pain-free is priceless.
Since finding Dr. Reveille, I feel good about myself again, I have a positive outlook on the future, and I know that I can handle what life will throw at me. Yes, it’s my disease, but it’s also mine to put in its place.
Texas, United States of America