Thanks to an abundance of easy-to-find (but not always accurate) information, many people have misconceptions about rheumatoid arthritis (RA). Maybe you’ve heard that RA is just a normal sign of aging or that it happens because of wear on your joints. (Both are untrue.) Here, two rheumatologists explain the truth behind some of the most common myths about RA.
Myth 1: Only older adults can get RA.
Adults and children alike can develop RA, says Max Konig, MD, a rheumatologist at Johns Hopkins University School of Medicine in Baltimore. He says this misconception might be floating around because kids are often diagnosed with a subtype of juvenile idiopathic arthritis (JIA) rather than RA. Kids with this type of JIA — known as polyarticular arthritis, rheumatoid factor positive — have a protein called rheumatoid factor (RF) or anti-cyclic citrullinated peptide (anti-CCP antibodies) that shows up in their blood, as do most people with RA.
RA actually becomes rarer as you get older, notes Nilanjana Bose, MD, a rheumatologist at Rheumatology Center of Houston. You’re more likely to have osteoarthritis than RA as you age, she says.
The majority of people are diagnosed with RA between their 30s and 50s, according to Konig. He says that problems in your immune system — like RF and anti-CCP antibodies — may actually show up over a decade before your symptoms start, indicating that RA can start much earlier than it’s diagnosed.
Myth 2: RA is the same as osteoarthritis.
Osteoarthritis and RA both affect your joints, but Konig says they’re different diseases with different treatment approaches.
RA is an autoimmune disease, meaning your immune system sees normal proteins in your joints and other tissues as a threat and tries to destroy them, he explains.
“It’s kind of like your immune system is turning on your own body and causing a lot of inflammation,” Bose says. “As a result, you get joint pain and swelling, and you can also get other symptoms like weight loss, fever, and fatigue.”
Because it’s a systemic disease — meaning it affects your entire body — RA can also involve things like your lungs and heart, says Bose. Lung disease is especially common in people who have RF or anti-CCP antibodies in their blood, known as seropositive rheumatoid arthritis, Konig says.
He notes that RA can also affect your skin, eyes, and, in rare cases, blood vessels. “You really have to treat RA more aggressively because we’re not just talking about joints, we’re talking about your whole body,” Bose says.
In comparison, osteoarthritis is limited to your joints. It’s the wear-and-tear type of arthritis rather than an autoimmune disease because it doesn’t involve the immune system, Konig says. Bose explains that unlike RA, osteoarthritis has no other symptoms beyond pain, swelling, stiffness, and tenderness.
Myth 3: There isn’t any treatment for RA, so you just have to live with it.
In the past, Konig says, people who ended up in the hospital with RA were treated with bed rest, cold compresses, massage, and leg elevation. This may have eased some of their symptoms, but it didn’t stop the disease from getting worse. Over time, this led to deformed joints and exhausting pain.
Thankfully, this is no longer true. “Over the past 40 years, the treatment of rheumatoid arthritis has changed dramatically,” Konig says. “We now have a plethora of highly effective therapies that can not only reduce or eliminate pain, but also quench joint inflammation and prevent the development of structural bone damage, joint deformity, and disability.”
Not only are there many treatment options for RA flares, but there are plenty to help manage the disease, explains Bose. Your rheumatologist will help you find the best treatment for your needs.
Myth 4: You shouldn’t exercise when you have RA.
This one may seem believable because you don’t want to put more wear on your joints. But the only time it may be true is if you’re having a flare-up, when you should scale back your activity. “We don’t want to stress out the joints, so we don’t recommend vigorous exercise at that time,” Bose says. Otherwise, exercise is an important part of managing RA. It can lessen fatigue and depression, make you stronger and more flexible, and even help prevent disability.
One big reason exercise is crucial is that when you have RA, you have a higher risk of heart disease, notes Konig. Getting regular exercise can lower your risk. The American Heart Association recommends a minimum of 150 minutes of moderate-intensity or 75 minutes of high-intensity aerobic activity every week.
Make sure you’re doing the right kind of exercise so you’re not too hard on your joints, Bose says, especially if your hips or knees are affected. She recommends low-impact aerobic exercises like swimming, light walking, or using an elliptical machine or stationary bike. Your rheumatologist or physical therapist can help you design an exercise plan that works for you.
Myth 5: You’re definitely going to have joint damage if you have RA.
There are so many effective treatments, especially when RA is diagnosed and treated early, that joint damage can often be prevented, Bose says. That’s why it’s so important to take action as early as possible. “The goal is to get the disease into remission quickly, since significant damage can occur early in the disease course,” says Konig.
Everyone’s RA works differently, says Konig, probably due to things like their environment, their genes, and how the disease shows up. Some people have aggressive RA, and even with treatment, they can have joint damage and deformity. But this is a minority of patients, Bose says.
Myth 6: It doesn’t help RA to make lifestyle changes.
Beyond exercise, other lifestyle changes can make a big impact, such as ditching cigarettes. “We know that cigarette smoking is a significant risk factor for the development of RA, and smokers tend to have more severe disease,” Konig says. Quitting can improve RA as well as your risk for heart disease.
Eating a healthy diet, exercising regularly, sleeping well, managing stress, and adding mind-body relaxation techniques are all key to helping control pain, fatigue, and inflammation and managing RA, says Bose.
People with RA are at a higher risk for certain types of cancer because of chronic inflammation. Lifestyle changes can also help lower this risk, Bose says.
Myth 7: Once you feel better, you can stop taking your medication.
“The reason you’re feeling better is because you’re on the medicine, so when you stop it, your disease will come back,” Bose explains. RA is a chronic condition. Some people go into remission, but for most, “the disease stays at a baseline, smoldering level with good treatment,” she says.
Your rheumatologist wants to give you as little medication as possible. If your disease has been in remission for a long time, they’ll try to slowly reduce or stop your treatment, says Konig. This process helps some people pinpoint the minimum amount of medication they need to control their RA. Others are able to stop treatment altogether, at least for a time, he says.
It’s important to note that you should never stop your medication without talking to your doctor first. For one thing, these drugs work by weakening your immune system from its unusual response, explains Konig. If you stop taking them all of a sudden, there’s a high risk that your immune system will decide to act up again.
Sometimes, people stop taking their medicine because they’re having side effects or don’t like how it makes them feel, notes Bose. If this is the case for you, it’s important to let your rheumatologist know that you’re having trouble rather than changing or stopping it on your own, she advises. If your next appointment is some time away, try sending a message through your online patient portal, or call your rheumatologist’s nurse for guidance.