Shannon Wylie was diagnosed with rheumatoid arthritis (RA) when she was four years old. Since the diagnosis the San Antonio, Texas, resident has used a wide range of medications and has undergone several surgeries; she had her right hip replaced when she was 12 and her left at 21; she had to have the right hip replaced for a second time. “There has been a lot of damage done at this point,” Shannon says. “I tell everyone I’m in the repair stage.”
Given how many years Shannon has been living with RA, it’s fair to say that she has spent her share of time in doctors’ offices—and specifically in rheumatology clinics. Today she sees her rheumatologist every three months, more often if she is experiencing a significant flare. Treating the disease has been an ongoing journey, she says, as she has worked with her doctor to find effective therapies. She feels grateful that her current treatment plan—which includes weekly injections of the biologic drug Orencia® (abatacept), Azulfidine® (sulfasalazine, a sulfa drug that treats pain and swelling), and Rayos® (prednisone, a delayed-release steroid)—is working well: “The medicine I’m taking now has been preventing more damage and controlling everything.”
Like many women who live with RA, Shannon depends on regular monitoring and engagement with her rheumatologist to manage the chronic condition. The relationship she has developed with her doctor and the dialogue that the two engage in when she has an appointment empower her to proactively manage the disease.
As a patient, understanding how your time and connection with your rheumatologist can best serve your needs is an important step in managing the disease.
Simple tips to ensure you get what you need from the time spent with your doctor.
Remember, these are the experts—this is your time to soak in their knowledge. Your doctor will be happy you are taking an interest and are an engaged patient.
Be honest about what is really going on.
Provide detailed information about your exercise regime, diet, home life, and work environment. These nonclinical factors can have serious implications for your health.
Get to know your doctor’s office staff.
These are the gatekeepers to your health—playing nice with these folks will do you a world of good.
Keep a journal.
Log and track changes in your mood, pain level, appetite, energy level, and sleep. This is your body’s way of communicating with you—so listen up.
Stay informed on measurement metrics
(i.e., biomarker testing such as the new Vectra DA) that can help you better gauge your disease.
Give your doctor a chance to get to know you as a person
Doctors are people too—developing a strong rapport can help your physician better treat you and help you feel more comfortable that you’re getting the best care.
What to Expect in Your Rheum Exam
Stacy Kennedy, MD, a rheumatologist at Rowan Diagnostic Clinic in Salisbury, North Carolina, treats patients managing RA and other autoimmune diseases. She says that when she sees an RA patient, a typical appointment will include disease assessment and disease management.
Often patients make an appointment because they are experiencing more pain than normal, Dr. Kennedy says, so assessment and management are directed at relieving that pain. “During disease assessment we are asking questions and performing a physical exam, working to determine what is causing a patient’s pain or flare,” she says.
Disease assessment will generally include a physical exam, during which the doctor will ask you to describe your current symptoms; listen to your heart, lungs, and bowel; take your pulse; and check for signs of inflammation (swelling, redness, heat, rashes) all over the body. He or she will also press on or squeeze all of your joints. (Shannon jokes that this is the “mini massage” portion of the exam.)
Another important aspect of a visit with your rheumatologist is a discussion of disease markers in the blood to monitor RA. Dr. Kennedy says that she looks carefully at “the complete blood count, as well as liver and kidney function and inflammatory markers.” Dr. Kennedy also includes Vectra® DA, a blood test that measures 12 markers of RA disease activity in the blood, which she says “is one of the most objective measures we have in helping to see if a patient is having a flare.”
Together the information you provide about your health, the physical exam, and the blood test results provide your rheumatologist with the information needed to help you plan for treatment.
Efficient Planning for Effective Treatment
The discussion of how to best manage a patient’s current disease state is most complete when a physician has all the most current information at the time of the visit. That means, ideally, that the doctor will be seeing the patient in person to assess physical symptoms and also to have the most recent blood test results.
Traditionally, this best-case scenario hasn’t always been possible; the standard operating procedure in most rheumatology practices has been for patients to have blood drawn when they come in for their appointment with their rheumatologist. Because blood test results won’t be available on that same day, the discussion with the physician will likely revolve around the previous round of tests, which could have been as long as three months earlier and therefore don’t reflect the current disease state.
Consider having your blood drawn a week or two before your appointment. In this way the lab results are available to your doctor at the time of visit and you can have a more thoughtful discussion about treatment planning.
While it sounds like a simple switch, the change can mean significant benefits for patients. In the traditional workflow, patients would wait for information to come via a phone call. “We all know what it’s like to call a doctor’s office—it’s a lot of phone tag back and forth,” Kalgren says. “It’s frustrating for patients and for the provider.” But with the new approach, she says, patients get the information they want right away, allowing them “to be more of a voice in their own treatment plan because the doctor and patient are looking at the same, complete information and discussing it together.”
Dr. Kennedy says that the opportunity to discuss a patient’s condition with information gathered from both the lab results and the physical exam results in a much more productive dialogue. “With practice integration we have vital information from labs at the time of the appointment, so we can discuss the results with patients, and they have a much clearer sense of what the plan is when they leave the appointment.”
As a patient, Shannon has seen the benefits of the new system, which was implemented at her rheumatologist’s office, Rheumatology Associates of South Texas. “I never really understood why I had the blood testing the day of the appointment because during the appointment we would be talking about blood test results from three months earlier,” she says. “Now my doctor is able to go over all of my markers with me; the treatment planning can be more accurate and need less adjustment.”
Importance of an Empowered Dialogue
After years of discussing treatment with various rheumatologists, Shannon has learned the value of informed, empowered conversations with her provider. “I want a doctor who will sit there and listen to me—not just tell me what the tests show,” she says. “I want someone who will go over every little detail and answer all of my questions.”
Dr. Kennedy says that engaging with your rheumatologist in this way is key to effective care planning: “I recommend that patients ask for an explanation of labs: ‘What labs were ordered and why, and what do they mean?’ I want my patients to understand and communicate; it’s their body and their health, and they need to know what’s going on.” When you have a clear understanding of your condition and treatment options, you can help devise a plan that best meets your needs. “I always tell patients that more important than the medications we prescribe is knowledge; the knowledge you gain about your disease state will have the greatest impact and will do the most to alter the course of your disease.”
Shannon agrees: “At each stage of treatment, you need to ask, ‘What is this treatment going to do for me? And what are the side effects?’ You can’t be afraid to talk to the doctor.”