15 Things Doctors Don’t Always Tell You About Rheumatoid Arthritis (But You Really Should Know)

Rheumatologists and other doctors share some surprising facts and clinical observations they wish all their RA patients understood.

When you finally get a diagnosis of rheumatoid arthritis, you may find yourself both relieved and anxious at the same time. You’re comforted by having a name for the constellation of symptoms and pain you’ve been dealing with in the dark for months (or years), but scared about what it means for your future: What medications will you need to take? Will you ever feel better or “normal” again?

Your doctor will go over your treatment plan and help address your most pressing questions and concerns. But there’s only so much you can go over in a 15-minute office visit. So we talked to a group of rheumatologists and other experts who work with arthritis patients to tell us some surprising facts or clinical observations they wish all their RA patients understood.

1. There is no one cause of RA

“We know there is no single cause of RA, and indeed there may be many different causes that lead to the disease,” says Carl Ware, MD, head of the scientific advisory board of the Arthritis National Research Foundation and director of the Infectious and Inflammatory Disease Center at the Sanford Burnham Prebys Medical Discovery Institute.

This is important because it helps explain why some patients have strong results from a treatment that doesn’t work well for others. Your doctor should be personalizing your therapy, helping you find which treatments work best for your individual situation, he adds.

2. Forget what you’ve read on the internet: There is no secret cure

“More than 1 million Americans have rheumatoid arthritis, and unfortunately there is no cure,” Dr. Ware says. Despite what you may have read or heard, there are no special diets, oils, secret protocols, or trial medications that can permanently banish the disease.

But while doctors may not yet be able to cure RA, the right treatment plan can help many patients achieve low disease activity or even degrees of remission. Years ago, before the sophisticated disease-modifying drugs of today were widely used, RA and other forms of inflammatory arthritis could cause severe, permanent joint damage. This is usually no longer the case for people who take these medications and see a rheumatologist for ongoing testing and monitoring. More and more biologic therapies are in development, so people who don’t respond well or stop responding well to a certain medication will have more ways to target their immune system and reduce symptoms and long-term damage.

3. Your herbal supplements are probably garbage

There’s a lot of buzz about natural remedies for RA. While some may be helpful — as an add-on to a treatment plan prescribed by a rheumatologist — many are snake oil designed to remove your money rather than your pain, says Don R. Martin, MD, of Sentara RMH Rheumatology in Harrisonburg, Virginia.

“Patients need to remember that ‘natural’ does not necessarily mean it’s healthy. Remember both arsenic and asbestos are naturally occurring substances,” he explains. Supplements are not regulated by the FDA the same way prescription and over-the-counter drugs are, so “the purity of agents and the quality of scientific studies regarding their effectiveness varies widely,” he adds.

Two kinds he says can be effective as part of an overall treatment plan? Capsaicin and turmeric. But make sure your doctor knows about any supplements you take, since some could have an effect on other medications you take.

4. You cannot smoke, not even socially

When it comes to RA, smoking has been shown to increase your risk of both getting arthritis in the first place and worsen your symptoms after you have it. This makes smoking one of the biggest risks for patients, Dr. Martin says. If you’re serious about managing your RA you have to quit smoking. This includes even a “social cigarette” here and there.

5. The sooner you start treatment, the better

When it comes to RA, there are some patients who might prefer a “wait and see” approach, especially if the pain and swelling are mild or tend to come and go. But once you get an accurate diagnosis, you need to start some treatment immediately, says Steve Yoon, MD, physiatrist at the Cedars-Sinai Kerlan-Jobe Orthopaedic Clinic in Los Angeles.

“Time is of the essence,” he says. “The sooner you start treatment, the more you can avoid further progression and breakdown of your joints.” Inflammatory forms of arthritis can cause underlying damage to your joints and other organs, such as your heart and lungs, even if you don’t feel obvious symptoms like pain and swelling. Systemic treatments like disease-modifying drugs not only relieve RA symptoms, but they also prevent this underlying inflammatory damage.

6. Consider looking into medical foods

Medical foods aren’t supplements; they are specially formulated foods made for the purpose of managing a chronic disease by meeting special nutritional needs that cannot be met by normal diet alone. Unlike supplements, medical foods are usually available by prescription only and have been approved by the FDA.

“If you have a lot of pain from arthritis, ask your doctor about medical foods such as Theramine, which can help decrease inflammation and pain,” Dr. Yoon says.

7. The pain you feel isn’t from your bones grinding together

A popular myth about RA is that the characteristic joint pain is caused by your bones rubbing together at the joint. Not so, says Ed Levitan, MD, of Five Journeys, a functional medicine practice in Newton, Massachusetts. “Studies have shown that even if an X-ray shows bone on bone that does not equal pain — the pain comes from inflammation of the joint,” he explains. So while it’s important to protect your joints from further damage, with RA it’s equally important to work on reducing inflammation in your body, he says.

8. What you eat can help manage your symptoms

An anti-inflammatory diet consisting of lots of fruits and vegetables, omega-3 fatty acids from such sources as grass-fed meat and wild salmon, and limited sugar and carbohydrates is a secret weapon for helping to manage RA for some patients, Dr. Levitan says. Reducing inflammation can help limit flare-ups and pain, he says.

15 Things Doctors Don’t Always Tell You About Rheumatoid Arthritis (But You Really Should Know)

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