Axel, Well, join the boat!!! I have had Reiter’s Syndrome for sixty plus years. I am HLaB27 positive. At first my parents, who really didn’t care, said I was having “growing pains”. My ankles would swell if I walked on the concrete streets of New York City for too long (usually with my mother as she went shopping). It was not until I was about 15 or so that I got a stomach bug during the summer while skiing at altitude (probably giarardia). Anyway, about two months later I got stiff. It lasted for two years off and on. I experienced irregular swelling on both sides of my spine plus some lethargy. When Sonny Liston and Ali fought in Lewiston, ME I was in the infirmary with German measles. I was taking lots of aspirin to reduce the fever. As soon as I got out of the infirmary, I did a cross-country ski race; the coach said if I did not race in the practice I could not ski for the team that weekend. I raced faster than another boy for one loop who went to the Junior Nationals, but tired somewhat on the second. The coach was impressed; however, the next day I was back in the infirmary with the flu. I was able to stay in high school (not that big a challenge).
I had a more significant attack during my junior year in college. My hips and lower bag started to hurt so much that it was difficult to ski, especially on ice! Each chatter of the skis sent some pain shooting through my hips. I spent a few weeks on crutches when it got bad but taking some aspirin seemed to help.
Two years after I left college my girlfriend’s son gave me strep throat. Within two months my body started to ache, slowly at first. First, it was the ankles swelling (I thought it was a long bike ride). Then, the rest of the body tightened up. I started taking Indocin and aspirin for several months. Since that did not provide much relief my doctor (an internist) sent me to his med school rheumatologist. He tried sulfasalazine, butazolidine (banned for many years, but banned first in horses). Gradually, the attack subsided.
Two more years later I got cellulitis in my left knee. I went to the hospital for IV anti-biotics. Two weeks after that I woke up with incredible pain throughout most of my body. My rheumatologist put me on methotrexate (MTX), 9 tabs, 3 mg each, weekly). That gradually brought my sed rate down from over 100 to about 75 in maybe two months. That rate gradually diminished over the next four months. Its side effects were nausea, headaches, and sores in my mouth and nose. I put an anti-biotic cream on those sores to prevent infection. I also smoked some week to reduce the nausea and help my appetite. I had lost 14 pounds in two weeks following the initial infection. The attack lasted about nine months.
I tried Enbrel without MTX for about nine years. That was a BIG mistake as the Enbrel hid the progression of Reiter’s Syndrome (RS). Its effect was that I had to get my left MCP replaced, my right ankle scoped, and my right shoulder scoped. Then, six years ago I had both TMJs replaced.
I have tried Humira, Cosentyx, and Simponi. None worked. I tried Otezla; it didn’t work as expected but I got somewhat depressed (one of its side effects). I tried prednisone again (after a thirty years hiatus). I got very angry with my dog so I stopped that. I am now taking Remicade every four weeks at an intermediate level of dosage. I started it after I had had my most recent attack that lasted about 15 months (my neck got terribly inflamed; muscles and tendons swollen and tight). After the third treatment I noticed some improvement; I could walk much better without feeling every bone in my spine jarring with each step.
Until 2016 I have been able to keep a somewhat active lifestyle although very diminished from what it might have been. The last two years have been a real “downer” as the anklylosing spondylitis became severe; C3-C5 are fused, C1 only exists as a shadow, several back vertebra are close to fusion; however, my spinal canal remains “OK” although somewhat narrow in one place.
I credit my good fortune to a few good doctors, to an active lifestyle (even when it hurts), and to avoiding infections. My social life is abysmal as people are all too quick to notice my stiff posture and lack of flexibility. Women, understandably, do not want to be with someone who has an inherited disease and, honestly, I don’t want to pass HLAb-27 onto anybody. On the bright side, I have not gotten any STDs that increase the risk of another arthritic attack.
Bottom line: do as much research as you can, take personal notes (e.g., blood pressure, heart rate, temperature, weight via spreadsheets) especially when you have attacks; the doctors love 'em; the documentation drives them “wild” and after you start a new med (I didn’t think of that until recently). Stay as active as you can; walk, swim, bike; avoid running but try hill-bounding (see: BOUNDING |).