Having JRA and Where I am with Arthritis Today
Through 29 years of living with rheumatoid arthritis, I have experienced both painful flares and periods of remission. I have tried many different medications and treatment regimens. I spent years in physical and occupational therapy and had many, many splints and other funky contraptions to straighten contractures and reshape slowly deforming bones. I have had several relatively successful surgeries, though maybe not with my ideal outcomes. Detailing my whole history of arthritis would take pages and pages, so I’ll try to give a few illustrative stories and then move on to the present.
I generally had an odd case of JRA to begin with. When I was very young and the disease was most active, I did have the hallmark morning stiffness. There was a period of time in early elementary school when I couldn’t walk in the morning. I would commando crawl to the bathroom and pull myself up to the sink to brush my teeth. My parents woke me up extra early every day, so I would have time for a long soak in the tub to get my legs moving. However, it did not begin in the wrists and hands like adult RA usually does. It began in one toe, then moved to the knee on the same leg, and after a few years, jumped to one finger on the same side, until finally affecting both elbows several years later in elementary school. I also didn’t have the fever and chills or skin rash now commonly associated with JRA. Also, I’ve never had an elevated sed rate or a positive rheumatoid factor.
And after the first few years, I didn’t have the hallmark swelling and stiffness. The arthritis would affect my joints and I didn’t have pain until after the damage had already been done. For example, I started having pain in my jaw my senior year of high school. That was also the time that I decided to get braces on my teeth for the second time, because I was embarrassed about how my teeth had shifted after the first short session of braces. When I saw the orthodontist however, he saw what my family hadn’t noticed looking at me every day, that my face had grown a little asymmetrically; the right side being properly developed with a longer jaw line than the left side which had an underdeveloped joint and shorter jaw bone. No wonder I was having pain on the right side of my jaw. In order to close the underdeveloped left side of my mouth, I had to grind down hard on the right. Looking back through my school pictures, we realized that starting around the 9th grade, my face did look a little more changed each year, but it was never enough that we noticed it.
At the time, the maxillofacial surgeon advised against surgically correcting my jaw. I was in pain, but wasn’t unable to eat solid food. The dangers of the surgery at the time (which involved breaking both parts of my jaw and inserting rib bone then wiring my jaw shut for six weeks) greatly outweighed the pain I was in. Today, I am a candidate for TM joint replacement surgery, with custom-made titanium TM joints, but that story and the related insurance issues will be left for another blog.
As a child, a few rheumatologists told me that I would outgrow my JRA. And for a short while in high school, it did seem as if that was the case. Joints that were active when I was very young seemed to have "burned out." I would feel great for periods of time, and I was allowed to cut back or discontinue medications, only having occasional swelling when I exercised too hard. College and my early 20’s were a relatively benign period, with one short, but bad flare up in my good leg. Since then, that knee swells only when the weather is hot and humid and when I exercise too much.
My current flare began in late 2004, after I graduated from law school. I had been taking Celebrex and Plaquenil for several years at low doses, increasing the amounts whenever I felt like needed it. I knew I would be losing my student health insurance, and that it would be at least several months before I would have a full-time job and new health insurance. So I stockpiled some of my prescriptions. Finding a job took longer than expected. For a year, I worked part-time temp jobs while job hunting and studying for the Bar. A couple large insurers had turned me down for individual and group health insurance, so I did not have a doctor in the area, and I had not yet established the minimum six-month residency in Maryland to qualify for the Maryland State Health Insurance Plan. I stretched out my pills, from twice a day, to once, then down to every two or three until they ran out. I certainly couldn’t afford to pay out of pocket when I could barely make my rent. I looked unsuccessfully for a clinical trial. I didn’t fit the mold of the trials because at 29, I was too old for the clinical trials for children with JRA, and the researchers at the RA studies that I talked to wouldn’t accept me both because of the longstanding JRA diagnosis and because my disease was not at that time in the moderately to severe activity range.
That Christmas I was working two jobs, one in retail for the holiday rush. Standing on my feet eight hours a day took a toll on my knees. First, my knee with more recently active arthritis began to swell, and I broke out the neoprene brace at work. I began to heavily favor that leg, putting all of my weight frequently on the other leg. I ended up aggravating the other knee too from the added strain, and I began to wear a brace on both knees at work, then icing them every night when I got home. After the holidays, I ended that job and the swelling and pain subsided. The cold and relative dryness of winter was a great help. I seemed to be back to normal.
Then in the summer of 2005, I was camping with some friends when I noticed my right hand was feeling thick and sore. I had a hard time canoeing that weekend. Then I began to hurt just grasping the steering wheel of the car or using that hand to hold my hair dryer. Luckily, I had just started my current job, and my health insurance had just become effective. I found a new rheumatologist, and she promptly restarted my Celebrex and started me on Humira (one of the TNF-inhibitor drugs). She chose Humira because of her success rate with it so far, and because I am able to give myself a shot every other week, which is more convenient for me than some of the other drugs available on the market. So far, I have responded well. Winter is always a better time for me. I have little stiffness in my hand, and I am able to walk longer distances and even jog short distances without swelling in my knees. Now that summer is almost here though, I can definitely feel the effect of the humidity. So I am contemplating asking my doctor to consider changing or adding another medication, and I will begin my summer daydreams of snow.
Christine Miller wrote about rheumatoid arthritis as a Patient Expert for HealthCentral. She was diagnosed at 16 months old with polyarticular juvenile rheumatoid arthritis and has gone through the ebbs and flows of disease activity — many medications, much time spent in physical and occupational therapy, surgeries, and periods of relative remission.