How to Make the Most of Your RA Rheumatologist Visits

For many people with rheumatoid arthritis (RA), doctor visits can be frustrating. Time may be very limited, and you may leave feeling like your rheumatologist didn’t hear your concerns or answer your questions.

Here are some strategies for making the most out of doctor visits when you have RA.

To make the most of a visit with your rheumatologist, it’s important to know what your doctor wants out of the visit, too.

“In general, the goal of the physician is to know how the patient is doing,” says Neal Birnbaum, MD, a rheumatologist at MarinHealth in San Rafael, California, and a past president of the American College of Rheumatology. “We want to know, is the patient responding to the treatment?”

Typically, Dr. Birnbaum says, a rheumatologist will ask a series of questions about your RA, such as:

• Do you have any painful, swollen joints?
• How long does joint stiffness in the morning last?
• Are there activities you have trouble with?
• Are you taking your medication as prescribed?
• Are you experiencing unpleasant side effects from your medication?

Sometimes, Birnbaum says, your doctor will use a questionnaire and possibly other measures to “score” your arthritis severity, as a way to tell if your RA is getting better or worse. But often, he says, such assessments aren’t needed.

“By and large, people come in and say either, ‘This drug is working great, I’m doing fine,’ or ‘This isn’t working, I’m not happy,’” says Birnbaum.

Some medications require monitoring for potential side effects. For the widely prescribed drug methotrexate, for example, Birnbaum says your doctor may order blood tests to check for anemia or liver inflammation.

In general, Birnbaum says, your doctor is likely to order tests prior to your appointment that assess your RA disease activity, although this may not be needed for every patient before every visit.

Whenever your doctor is evaluating a new or current treatment, they’re assessing both risks and benefits. “We’re looking at the patient’s arthritis, their overall health, and then trying to pick something that has the highest chance of success and the lowest chance of causing problems,” says Birnbaum.

With your doctor’s goals in mind, it’s important to know what your goals for the visit are. This will, of course, be different for every person, and may depend on how your RA is affecting your life.

“For some people, the goal should be to fully express to your doctor how you’re feeling and working with them to get out of your immediate pain,” says Cristina Schaefer, who lives in the Houston area and was diagnosed with RA about 20 years ago at age 20. Schaefer has been active for years as a volunteer for the Arthritis Foundation, working to help people navigate their diagnosis and treatment.

If you’re newly diagnosed, Schaefer says, the goal of any visit should probably be to understand where your RA currently stands, and where you could be — in terms of symptoms and disease activity — with the variety of treatments that are available.

Goals that you mention to your doctor can also be more tangible. When her doctor once asked what she wanted out of her RA treatment, “My honest answer was, ‘I would like to be able to braid my daughter’s hair without having to stop because of the pain,’” says Schaefer. “Whatever your goal is, whether that’s walking to the mailbox or walking a mile, tell your doctor so they can help you achieve it.”

Brianna Ramos is a 28-year-old resident of the Tampa Bay, Florida, area who was diagnosed with a juvenile form of arthritis similar to RA at age 13 and blogs at That Girl With Arthritis. She says one way she prepares for her doctor visits is to review her routine blood test results beforehand. “Just to see if there’s anything I have questions about, because time is so limited in these appointments,” she says.

Ramos also uses the Notes app on her phone to list any “action items” she wants to be completed during her appointment, such as getting a test or referral or potentially trying a new treatment. “Sometimes it’s nothing, and I also don’t have many questions,” she says, when her arthritis has been relatively calm.

Schaefer and Ramos agree that people with RA often downplay their symptoms at an appointment, even if they're not aware they're doing this.

“It’s easy to go in there and sugarcoat things, or even forget what’s really changed since your last appointment,” says Ramos. A helpful way to counter this, she says, is to bring a spouse or close family member to the appointment — someone who has observed your day-to-day challenges.

Keep Records

Both Schaefer and Ramos keep a record of noteworthy symptoms and episodes since their last appointment — something you can do on your phone for easy recall before or during your appointment.

It’s important to note any health issues you’ve had, even if they don’t seem connected to your RA. “The first time I experienced lung pain, I genuinely had no idea that it was related to rheumatoid arthritis,” says Schaefer. But discussing it with her rheumatologist led to a referral to a pulmonologist, along with prescriptions to treat her symptoms as needed.

Being specific about your symptoms can help your doctor get a fuller picture of how your RA is affecting your life. “Whether it’s morning stiffness, not being able to sleep at night, not being able to grip a pencil,” says Ramos.

Write Down Your Questions

Make a list of questions you want to ask to ensure you don’t forget to ask them. How many questions you have, and on what topics, will reflect the goals of your visit, Schaefer says — whether that means discussing potential treatments, a referral to a physical therapist, or just being able to continue living a healthy life.

“Don’t be afraid to ask questions, particularly if it looks like the drug you’re on isn’t effective or has lost effectiveness,” says Birnbaum. “Then, you should have a conversation about what your options are.”

Birnbaum also recommends bringing a list of all your current medications and health conditions, with an emphasis on any health problems that developed since the last visit.

Whether it’s during or after a visit, don’t hesitate to bring up anything your doctor mentioned that you don’t fully understand. “Don’t be afraid to ask, Why are you recommending this treatment? Are there other options?” says Birnbaum.

To communicate with your doctor between appointments, you can typically either call the doctor’s office or use an online portal for secure messaging. “Having open communication even between appointments is really important,” says Schaefer, since you may need to move up your appointment or get a prescription or referral for worrisome symptoms.

If you have a good rapport with your doctor you’ll feel more comfortable contacting them between appointments without feeling like you're bothering them, says Schaefer. “Building trust is so important, knowing you can go to your doctor for whatever it is,” she says.

For Ramos, who spent years seeing a pediatric rheumatologist before switching to adult care after college, the transition underscored that care for adults with RA is patient-driven. “More of it is put on you, as the patient, to make the decision about where to go next,” she says.

If you’re not communicating well with your doctor, it may be worth thinking about switching to a different provider. “I know it’s difficult sometimes, but really take the time to find providers you’re comfortable talking to. That will make it a less scary journey,” says Ramos.

• Communicate effectively with your rheumatologist, be honest about symptoms, and prepare questions in advance to maximize the benefits of your visits.
• Keep a record of your symptoms and any notable health issues to discuss during your appointment. This will enable timely interventions or adjustments to your treatment plan.
• Don't hesitate to follow up on any advice from your doctor or to seek clarification about recommendations.