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. (Our Rheumatoid Arthritis Patient Guidelines can help provide some reassuring answers.) 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.
9. The bread basket may be doing you more harm than you think
“In my experience treating patients with RA, coming off gluten, dairy, and processed sugar helps at least 60 to 70 percent of people,” Dr. Levitan says. Some research, he says, indicates that gluten may be pro-inflammatory whether you are sensitive to it or not. This means that in addition to ditching junk food like cookies and cupcakes, cutting back on foods like bread and pasta, even if they’re whole grain, may help.
It’s a good idea to talk to your doctor before making any dramatic changes in your diet. They may be able to give you pointers on how to follow an elimination diet temporarily to see if there are any trigger foods that affect you personally.
10. Maintaining a healthy weight matters
When it comes to weight and RA, the connection is clear: Excess pounds not only put extra pressure on your already over-taxed joints, but being overweight or obese can also contribute to inflammation throughout your body, which can further worsen your symptoms, Dr. Levitan says.
A 2017 study from the Hospital for Special Surgery of nearly 1,000 people with RA found that overweight patients were 25 percent less likely — and obese patients were 47 percent less likely — to experience a sustained remission compared to healthy weight patients, even though all received similar treatments. Losing weight may reduce RA symptoms and help drugs that treat RA work better.
Other research indicates that weight can be a factor in the onset of RA. A Mayo Clinic study from 2012 found that obese people were 25 percent more likely to develop rheumatoid arthritis than those at a healthy weight. The connection may have to do with the inflammatory activity of fat cells.
11. Meditation is a seriously powerful — and underused — treatment
“Most autoimmune disorders react negatively to stress so learning how to manage your day-to-day stress is huge,” Dr. Levitan says. In fact, one of the first “prescriptions” he gives his patients is to download a meditation app and start using it regularly. Personal time and positive self-talk are also important stress reducers, he adds.
12. Exercise doesn’t have to hurt to help
When it comes to all kinds of arthritis, exercise can feel like a catch-22. You need to stay active to help minimize stiffness and swelling, but thanks to RA’s effects on your joints, the very exercises that can help you manage it can sometimes feel hard or even impossible to do. (Here’s what recent European guidelines say about exercising with inflammatory arthritis.)
But that doesn’t mean you should give up on fitness. The trick, Dr. Levitan says, is to find a way to move your body that is manageable and, importantly, that makes you happy. No need to go hardcore (in fact, high intensity exercise can make joint inflammation worse) but it is important to move every day.
With your doctor’s OK, you could start with 10-, 15- or 20-minute daily walks. Swimming or using an elliptical machine or recumbent bike at the gym are also easier on your joints. Gentle exercises like yoga can keep your joints limber and your muscles strong, he adds.
13. Treatment may make you more susceptible to other illnesses
“Many medications [used to treat RA] work by lowering the body’s immune system,” says Orrin Troum, MD, a clinical professor of medicine at the University of Southern California and rheumatologist at Providence Saint John’s Health Center in Santa Monica. This helps the body to stop attacking the joints, but at the same time can make you more susceptible to outside infections, like pneumonia, he says.
This does NOT mean you should stop taking your meds, but it’s important to know so you can take extra steps to protect yourself from germs and get treatment as soon as possible when symptoms of infections occur, he adds.
It’s not just the newer biologic drugs that affect infection risk. Conventional DMARDs like methotrexate and corticosteroids to manage flares can raise your risk of infections as well. Any time your doctor prescribes you medication, it’s a good idea to ask about infection risk (as well as other potential side effects) and any precautions you can take to minimize them.
14. Consider learning more about medical marijuana
If you grew up in the “just say no” era, you might be hesitant to try this remedy, but it may help RA patients, says Jordan Tishler, MD, a Harvard-trained emergency medicine physician and founder of InhaleMD. There are certain types of cannabis specifically grown for medicinal purposes that might help treat the pain of RA pain, he says.
“I have seen improvements for patients in pain control, stiffness, and increased mobility with cannabis,” he says. “Most importantly, I have seen significant improvement in reported quality of life.” Marijuana is legal for medical use in 31 U.S. states, and according to a new Medscape poll, 80 percent of health care providers say it should legalized nationally.
If you are interested in trying cannabis and it’s legal in your state, talk to your doctor or another provider who’s experienced in this area. There are many different strains of the plant, and cannabis products contain varying ratios of the active ingredients CBD to THC (so they’ll impact your body differently). It’s important to remember that cannabis can interact with other medications you may take or affect other health conditions you have, so make sure to talk to your doctor before you explore this option.
15. Pregnancy may give you a reprieve
RA is primarily diagnosed in women during their childbearing years, so it’s natural to have many questions and concerns about how the disease will affect your fertility, pregnancy, and postpartum (ex: breastfeeding) health. (You can read more about these issues in our Family Planning Patient Guidelines.)
The good news is that for many patients with inflammatory arthritis, pregnancy temporarily suppresses the immune system. This causes an overall decrease in inflammation throughout the body, giving many patients a nine-month window of some relief. On the other hand, some women may still experience flares during pregnancy, so it’s important to work together with both your ob-gyn and rheumatologist closely to manage all your arthritis and pregnancy symptoms.
Watch: Starting Rheumatoid Arthritis Treatment
This video is part of an educational project from researchers at Yale University, Berkshire Medical Center, Carnegie Mellon University, Hospital for Special Surgery, CreakyJoints and the Global Healthy Living Foundation, and ArthritisPower. It was made possible with support from the Rheumatology Research Foundation. Watch more videos from this series here.