What doctors wish patients knew about rheumatoid arthritis

Among chronic conditions, one stands out for its enigmatic nature and debilitating impact: rheumatoid arthritis (RA).

This condition presents an array of challenges and wreaks havoc on the lives of those who live with it. And while there are effective treatments that can prevent or slow the progression of rheumatoid arthritis, many questions remain unanswered, leaving patients and their families searching for better strategies to manage this life-altering condition.

Rheumatoid arthritis—characterized by painful inflammation and joint deformities—is the most common autoimmune disorder, affecting about 1% of U.S. patients, happening two to three times more frequently in women than men. And while rheumatoid arthritis can strike people of any age, the peak onset is from 50 to 59 years old.

The AMA’s What Doctors Wish Patients Knew™ series provides physicians with a platform to share what they want patients to understand about today’s health care headlines.

For this installment, two physicians took time to discuss what patients need to know about managing rheumatoid arthritis. They are:

• Shawn Baca, MD, a rheumatologist at Rheumatology Associates of South Florida and clinical associate professor at Florida Atlantic University Schmidt School of Medicine. He also represents the Florida Medical Association in the AMA House of Delegates.
• Amish J. Dave, MD, a rheumatologist at Virginia Mason Medical Center in Seattle who also serves in the House of Delegates, representing the Washington State Medical Association. He is also a member of the AMA Ambassador Program.

“A lot of people think that rheumatoid arthritis is just bad arthritis, and it’s not. There are actually over 100 different kinds of arthritis and rheumatoid is a very specific disease where the immune system attacks the person’s musculoskeletal system,” Dr. Baca said. “But it’s also systemic. It can attack your lungs and kidneys and you can get vasculitis.

“So, there are different parts to it that are not just related to the joints, but the joints are predominantly what brings a person to a rheumatologist,” he added.

Rheumatoid arthritis “doesn’t necessarily go away and a lot of people think that if they do everything right, they can just push it into remission and they don’t have to worry about it,” Dr. Dave said. But “this is a chronic condition. You can get it to a good place, but you won’t cure it.”

“The chances of going into remission are very low, probably less than 5%,” Dr. Baca said, noting that “I have only a few patients who have been in remission over my 30 years of practice. But a majority of patients when they start medication, they end up being on some type of therapy for most of their lives.”

“There are people who can come off their medication and go into remission for long periods of time, even years, but it flares up again,” Dr. Dave said. “We think of this in the same way we think of Crohn’s or ulcerative colitis. Relapsing rheumatoid arthritis tends to be that way too.

“The single best thing you can do is have a good relationship with a thoughtful rheumatologist who's following you over time and recognizing that there will be good months and bad months is important, and that medications can fail,” he added. “It means that being flexible and needing to switch to a new medication might be important for you.” 

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“Rheumatoid arthritis often tends to be symmetric synovitis, or inflammation of joints. So, often both hands, both wrists, both feet, both ankles have inflammation in the joints, but can affect other joints too within the body depending on that particular individual,” Dr. Dave said. “But the classic person with rheumatoid arthritis has symmetric joint inflammation with more than an hour of morning stiffness.”

“Presentation would be somebody who’s young—20s to 40s—and then there’s a second bump somewhere around the 60s. So, we see it in basically young and older age groups,” Dr. Baca said. Rheumatoid arthritis “usually presents with swelling across the hands and wrists and is symmetric. It should almost always be symmetric hands, wrists, knees, feet, shoulders.

“About the only places that rheumatoid does not attack is the base of the thumbs or the lower back,” he added, noting “most of the joints are basically prey to it including the temporomandibular joints—TMJs—and cricoarytenoid joint, your voice box, can actually be affected by RA.”

“Usually, the symptoms have to be present for at least three months for it to be considered because there are other types of arthritis that can be viral, or following an infection,” Dr. Baca said. “But the difference is that those things will go away whereas RA will never go away.”

“Patients with rheumatoid arthritis are at an increased risk for cardiovascular disease,” Dr. Baca said, noting that these patients “have inflammation of the pericardium, the myocardium and they can get inflammation of their arteries”.

“Some of the risk factors are related to the fact that we used to use more steroids in the past, which raise your cholesterol, blood pressure, weight and all that other stuff,” he added. “But there are strong studies that show that people who are treated aggressively can actually reduce their risk of a heart attack when they’re on RA medications.”

“So, the added benefit of taking the medications is that it reduces your risk factors for other diseases,” Dr. Baca said.

“When we think about RA, it’s important to understand that its incidence is increasing over time” as the population ages, Dr. Dave said. “There are almost certainly some environmental triggers—including pollution—that might be contributing to the rise in rheumatoid arthritis.”

“Smoking does increase your risk of getting the disease if you're genetically predisposed. And also, if you have RA and you smoke, it makes it more difficult to treat,” Dr. Baca said.

“Historically, it was tobacco which was the No. 1 cause of rheumatoid arthritis, but family history and genetics as well as obesity play a role,” Dr. Dave said, noting “there’s also suspected to be a trigger with heavy alcohol intake. So, all those things can combine to increase the risk of rheumatoid arthritis.”

“How quickly you’re diagnosed and how well you’re taken care of with rheumatoid arthritis really depends on where you live,” Dr. Dave said, noting it is expected that the number of patients per rheumatologist is expected to double by 2025.

“If you live in Boston—which is one of the highest concentrations of rheumatologists in the country—versus if you live in Alaska, there’s a huge discrepancy in how long you might have to wait. It’s not uncommon,” he said. “It’s important to recognize for physicians, for family members, for lawmakers, for insurance companies, that the costs of rheumatoid arthritis are really high, and telemedicine has helped with that to some extent, but it doesn’t replace needing to feel or examine the joints, needing to inject or aspirate joints and drain fluid out of it when that’s occurring.”

“What type of insurance you have makes such a big impact on the types of medications you can get, your access to medications and whether or not you’ll be stuck following a step therapy method of starting one medicine and then going to another medicine,” Dr. Dave explained. “The medicine that your rheumatologist might want to start you on because he or she or they feel like that’s the medicine for you is not necessarily the medicine that you’re going to get.”

“More often than not, the rheumatologist’s staff is arguing over a $40,000 to $60,000 drug per year and that’s really what tests insurance companies,” he said. “The cost of medications for rheumatoid arthritis and other autoimmune diseases is huge. It’s driving up the cost of health care in general.”

“Prior authorization and step therapy really affect our patients disproportionately to other illnesses and it’s very difficult sometimes to get medications simply because insurance rules and regulations make things almost impossible,” Dr. Baca said. For example, “one patient who was doing very well on a particular regimen after not doing well with drug X, but when the insurance was changed by their employer, and now drug X is the preferred biologic.”

Insurance “wanted a trial within X number of months, meaning that you had to try it again. So, there is nonsense like that, and we try to get around that as much as we can,” he said.

“If you have good insurance and you have good access to a rheumatologist, there’s never been a better time to have rheumatoid arthritis in the sense that there are so many medications that can be used to treat rheumatoid arthritis,” Dr. Dave said. “For a lot of people, it’s important to recognize that your rheumatologist will pick a medication for you based on what types of antibodies you have, based on how severe your inflammation is.”

“We often treat initial attacks of inflammation with medicines like prednisone or steroids, but the goal is not to keep you on prednisone for the rest of your life,” he said. “The goal is to get you on what we call steroid sparing medications or steroid sparing DMARDS—disease-modifying anti-rheumatic drugs.”

Additionally, “we often use medicines thinking about the cost to patients and what the insurance providers will approve first,” Dr. Dave said. “We often start with medicines that have been around for a long time like hydroxychloroquine, methotrexate, leflunomide and sulfasalazine. Then we might move to biologic medicines that have been engineered specifically to target or block a specific protein in the immune system.”

“Medicines are a huge part of caring for patients with rheumatoid arthritis, but lifestyle factors matter so much more too,” Dr. Dave said. That means “stopping smoking if you smoke, cutting back on alcohol intake, especially if medicines like methotrexate are prescribed by your rheumatologist … because it can affect your liver and raise your liver lab tests and cause inflammation in the liver.”

“Then, exercise because we know that adipose tissue or fat tissue increases inflammation in the body,” he said, noting that “weight loss has been shown to be super effective at reducing rheumatoid arthritis and hopefully reducing flare ups.”

“In terms of eating an anti-inflammatory diet, there's not a lot of proof. This was something that was worked out a long time ago before we had treatments,” Dr. Baca said. “My bottom-line answer is if a patient feels better avoiding certain kinds of things, so be it. I'm never going to be against somebody eating a healthier, vegetable-based diet.

“But at the same time, I'm not going to tell them that it’s absolutely mandatory, because it doesn’t make as big of a difference as proper pharmaceutical therapy,” he added.

“Vitamins and eating a healthy diet are great and super good for your body in so many ways, especially if they promote sleep or help with energy levels, but they don’t stop the inflammation itself,” Dr. Dave said. “Being on medication is what does that. So, really working through a rheumatologist is so important.”

“Rheumatologists work very closely with the primary care physician and we—especially in the COVID era—have really had to work closely with them to make sure that we're keeping people up to date on vaccinations,” Dr. Dave said. But “we're facing a lot more vaccine hesitancy than ever before. And that's been challenging.

“It used to just be the COVID vaccine and now we're having to remind people with rheumatoid arthritis that they need to keep up to date on their pneumococcal vaccines, tetanus boosters, the annual flu shot and making sure they get their two-shot shingles series,” he added, noting that staying up-to-date on vaccinations is important because “your body’s more focused on attacking your joints and other organs than fighting off infections” such as influenza, COVID-19 and RSV.

“Having RA alone increases your risk of infections. And then the flip side of it is having RA alone or being on medicines or RA that suppress your immune system also place you at risk of infection,” Dr. Dave emphasized.

“If you came to my office 30 years ago when I first started as a young pup, we had probably 30% of the spaces in the waiting room filled with wheelchairs,” Dr. Baca said. “If you come to my office now, you will hardly ever see any wheelchairs in the waiting room.

“The difference is that we’re trying to prevent destruction of joints, especially hips, knees and hands with earlier intervention and newer treatments,” he said.

“Patients need to make sure they understand that there’s always help out there, but they have to look for it in their communities,” Dr. Baca said. “Even if you don’t have health insurance, there are ways that you can get care.

Many communities such as ours have free arthritis clinics.  Seek out independent local rheumatologists, many are flexible and can affordably see patients without insurance and help one navigate the health system to get the medications they need,” he said. “But you have to look for resources and try to get treated early because that’s how you’re going to prevent crippling, which is the worst outcome that we can have.”