In today`s article Von Rupert share her story about her son Gabe. The symptoms, the diagnosis and the treatments of Spondyloarthritis.

It Started with a Limp

The Symptoms

My son’s back disease didn’t start with back pain; it started with a mild limp. Gabe was 13, excited he was old enough to ride his bike alone around the neighborhood, excited to start his own lawn business, excited to join the ranks of “teenager.”

In January, a month after his birthday, the limp started. He blamed it on a fall he had taken while walking our dog. “It’s not painful,” he said, “just annoying.” It went away. A month later, it returned. Gabe blamed it on his heavy winter boots. A few months after that, he blamed it on his new summer sandals. Through it all, the doctor blamed it on growing pains.

As we edged toward his fourteenth birthday, the limp morphed into a waddling gait with knee pain and back stiffness. It morphed into Gabe feeling too sick to ride his bike, rake leaves, or do anything typical teenagers do.

We tried ibuprofen, acetaminophen, and topical creams. They didn’t help. We tried hot water bottles, heating pads, Epson salt baths, and heat wraps like Thermacare. They eased his pain, but only while he was using them.

 

The Spondyloarthritis Diagnosis

Once the waddling gait began, I pushed our doctor for more tests, more referrals, and more answers. Over the next six months, Gabe saw three neurologists, two orthopedic specialists, a geneticist, an herbal doctor, a gastroenterologist, a homeopathic doctor, and a Rheumatologist. From the Rheumatologist, Gabe finally received his diagnosis: an autoimmune disease called Spondyloarthritis.

The next step for me was a quick education via the internet. I learned Spondyloarthritis is a form of arthritis that targets the spine and the Sacroiliac joints of the lower back. In children (and in a minority of adults), it can also strike the arms, legs, hands, and feet. Gabe’s own immune system was attacking his joints!

There’s a genetic component to the disease—a genetic marker called Human Leukocyte Antigen (HLA) B27–which can be detected through a simple blood test. HLA-B27 doesn’t cause Spondyloarthritis; researchers believe it takes a combination of genetics and one or more environmental elements to “turn on” the disease.

It was a bittersweet period for us. We finally had a diagnosis, but by the time we received it, Gabe’s lower back, his hips, both of his ankles, and both of his knees were affected, and that waddling gait was more pronounced than ever.

Most troubling of all, Gabe’s personality had changed. Chronic pain had taken its toll, making him lethargic, irritable, and depressed. His school work, his relationships, and the rest of his health suffered. He was plagued with unexplained weight loss, poor muscle mass, and decreased concentration.

The one bright spot besides receiving his diagnosis was the arrival of summer–the heat was a balm to his pain. Nothing eased his symptoms more than hours spent outside. On the days when he could work in the yard or sit on the deck with the sun warming his skin, he was almost like his old self—fun, busy, and happy.

 

The Spondyloarthritis Treatment

The Rheumatologist tried multiple prescription medicines. She started with Nonsteroidal Anti-inflammatory drugs (NSAIDs) like Naproxen, Tolmetin, and Celebrex. None of them slowed down the progress of his disease. She ordered Corticosteroid injections for his right knee and ankle, draining the fluid first and then injecting the cortisone. Not only were they ineffective, but they caused Gabe so much pain he developed a fear of needles that continues to this day.

As summer cooled into fall, Gabe’s disease was like a speeding train headed downhill without any breaks. His feet began to swell, and almost overnight, his pain increased so much that the doctor prescribed a narcotic. An MRI revealed an abundance of fluid in the small bones and joints of his feet. The technician told me his feet “lit up like Christmas trees.”

Fall froze into winter, and we moved up another stage in Gabe’s treatment: Disease–modifying Antirheumatic drugs (DMARDs). First Sulfasalazine which dragged him into a deep depression. Then Methotrexate, a drug used to treat some forms of cancer. Due to its extensive list of possible side effects, I had to sign a release form to show I understood the risks. My hand shook.

We had high hopes, but, like all the other drugs, Methotrexate failed. Gabe’s health worsened. His weight dropped until it didn’t even show up on the growth charts for his age group. He turned fifteen and another January rolled around. With no other options, the gastroenterologist recommended admitting him to the hospital to insert a feeding tube.

Just in time, we received insurance approval for the final class of medicines available in the treatment of Spondyloarthritis: Tumor Necrosis Alpha (TNF-alpha) blockers. Of the two medicines available, we chose Enbrel, a Biologic drug that works at the molecular level, delivering its power straight to the lower back and to the SI joints. The possible side effects are frightening, including an increased risk of cancer, a challenged immune system, and skin infections. My hand shook again.

 

The Cure?

A little over two years after that first limp, I gave Gabe his first injection of Enbrel. Getting the dosage right took weeks, but once we did, within only a few days, Gabe was outside riding his bike. Within two weeks, he returned to mowing yards.

A month later, he was bursting with so much excess energy, we had to find extra work for him to do. His grades improved, his relationships improved, and suddenly, I had a full-fledged teenager on my hands. What a relief!

I’d like to say, Enbrel is the cure-all for Gabe. It isn’t. But it helps more than any other medicine or therapy he’s tried. Another winter is here, and you guessed it, as soon as the temperature dropped, Gabe’s pain returned. His back stiffened and began to ache, his feet and knee swelled, and, for the first time, his hands and fingers joined the list of affected joints.

We’re thankful though. Gabe’s in far better health this winter than he was last year when he was facing a feeding tube. We’re back to relying on heat to supplement his medicine. But this year, Gabe has remained his happy, fun-loving self. He keeps busy, knowing spring and summer always arrive, and this winter-time flare will pass. I wish we could bottle summer, squeeze it into a tube or stitch it into a heating pad. I’m waiting for someone to invent that.

It Started with a Limp Gabe`s Spondyloarthritis Symptoms, Diagnosis and Treatment

By Von Rupert

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