Twenty years ago, I rode a bicycle or stationary-bike daily. I used to pedal almost effortlessly, for 5-10 miles. And I loved it — lived for it. At home or on vacation, if I could score the use of one, I was pedaling hard. Cycling was something that I couldn’t seem to outgrow. What a difference two decades, age and a diagnosis can make …
Rheumatoid Arthritis (RA) is an autoimmune disorder that causes chronic inflammation of the joints. Without proper treatment, it can wield unimaginable damage, i.e. joint deformities and even disability (in some patients). It occurs when the immune system mistakenly attacks the body’s own tissues. And RA can also impact the skin, eyes, lungs, heart and blood vessels.
Despite the social myth of grannies in rocking chairs, Rheumatoid Arthritis isn’t a disease exclusive to the elderly. It’s very much the opposite. Onset for adults, is usually between the ages of 30-60. In other words, highly productive years. Like other rheumatic illnesses, women are three times more likely than men to be diagnosed. Juvenile RA (also known as Juvenile idiopathic arthritis) is what the disease is referred to when it presents itself in children. There are approximately 300K children, in the U.S., living with JRA. Toddlers, under the age of two, have even been diagnosed with it.
The onset of RA can develop over a matter of a few weeks, or a few months. Many symptoms actually mimic those of influenza. This was my personal experience. It wasn’t until my joints swelled, about 12-14 days later, that I realized I wasn’t fighting the flu.
By now, you may be wondering about heredity. One study showed that genetics played a role in slightly more than half of all diagnosed cases. My great-grandmother, who I barely remember, had Rheumatoid Arthritis. The disease skipped two generations and then found me. It happens. But there are thousands who are diagnosed with no hereditary link. In other words, there is no certainty that having a family member with RA will equate to a diagnosis in you. Even in a study done on identical twins, who share the same genes, only 15% were likely to be diagnosed with RA.
Simple tests like labwork, x-rays, MRI and ultrasound, are used to achieve a diagnosis. Your family physician may order them, or refer you to a Rheumatologist who will do so. Your RF Factor (get used to that term) measures the amount of RF antibody present in the blood. About 70-80% of all adults, who are diagnosed with RA, will have a high RF Factor. Approximately 50% of children will also have it. Those who do are more likely to have RA in adulthood. Some JRA patients can outgrow the disease.
Since RA is considered chronic (lasting longer than 3 mos.), there is no cure. The disease will progress with time. Each patient will experience periods of remission (when symptoms are barely present) and “flares” (when the disease increases its activity within the body).
Treatment for RA and JRA is very similar. Exactly how any patient, adult or child, is treated depends upon the severity of the disease in their bodies. Doctors often prescribe NSAIDs (Nonsteroidal anti-inflammatory drugs) to help reduce inflammation. DMARDs (Disease-modifying antirheumatic drugs) are also prescribed to slow the progression of the RA. Possibly the most common of these is Methotrexate — a chemotherapy drug. Let that sink in, for a moment. It may be administered orally, by injection, even IV. And it can bring many of the side-effects that are seen in Cancer patients (who are taking much higher doses). Biologic DMARDs, i.e. Orencia, Enbrel, Humira, etc., are also possible treatment options. Your doctor will discuss, at length, which treatment approach is best for you and why. Teens with JRA are typically referred to an “adult” Rheumatologist, around the age of 17-18 years. For many patients, occupational therapy and surgery is sometimes needed as the disease progresses.
I cannot lie to you, or sugarcoat it. RA and JRA changes lives. And this is something that goes beyond the patient — affecting spouses, parents, children, siblings. It can change relationships, at home … at work … at school. It changes the patient’s abilities, mood, even productivity. RA and JRA patients live with pain, lack of mobility, fatigue, the side-effects of medications, trouble sleeping, etc. Some JRA patients have even struggled with Anorexia and growth failure. And children with any chronic illness are often the targets of bullying. This is what becomes the new normal. It is a lot to take in … accept … and manage. Still, it can be done. It’s important to remember that.
Living with RA and JRA is a blend of positives and negatives. For example, healthier eating habits are a positive that everyone can benefit from. Gentle, low-impact exercises are another positive. Patients can feel weather, i.e. rain, even before it arrives. As the barometric pressure drops, their joints swell. They become more sensitive to cold, air conditioning, etc. A study done at Tufts University, back in 2007, revealed that just a drop of 10 degrees increased the pain in rheumatic patients. Negative effects of the disease.
Concessions must be made for a patient to live happier and comfortably, i.e. with the thermostat, activities, etc. That too can be a positive thing. Personally, my cycling was traded-in for walking. There are handy tools, cooking utensils, even video gaming systems that are better suited for RA and JRA patients. All fun, helpful and positive. All can be used (and will be) by other family members. No, you don’t have to give up everything. But, often times, you do have to change how you do them, i.e. 9 holes of golf on a Par 3 instead of 18 on a Par 5. Once upon a time, I used to shop in a mall like I was the Energizer Bunny … going … and going … and going. Now, I limit my excursions to 2 hours. It helps me to manage the fatigue that will follow. If you have RA or JRA, it will help you too. Learn to use the internet, wisely — find locations that sell the products you are looking for, before you leave home. Enjoy activities, even though you must limit them. If you push your body, the RA will push back even harder. It isn’t worth a setback.
Unfortunately, Depression can be a problem for some patients. When the frustration of a flare, pain, limitations, etc. complicate life … it can be difficult to have patience and remain optimistic. Yet, that’s exactly what it takes. Much about living with Rheumatoid Arthritis is a mental game. RA or JRA has entered your life. But you can control your lifestyle. You can control the disease through medications, changes to your diet, activities, etc. It doesn’t have to control you. When you embrace optimism, you become a better player … smarter … happier … and definitely moving on with your life!
* Photo by Bogdan Dada on Unsplash