You’ve been feeling achy and unwell for weeks or even months, and it’s just not going away. Maybe your hands or other joints are especially stiff in the morning, and it can take hours before they loosen up. Your primary care doctor thinks it might be rheumatoid arthritis (RA) and recommends you see a rheumatologist. Or maybe you suspect RA yourself.
Don’t hesitate before making an appointment to see a specialist. If you think you could have rheumatoid arthritis, “it’s extremely important to see a rheumatologist as soon as possible,” advises Vivian Bykerk, MD, a rheumatologist with the Hospital for Special Surgery in New York City. “If the correct treatment can be started within two to three months, then the prognosis for achieving remission is much better.”
Unfortunately, many patients don’t see a rheumatologist or start treatment this quickly. According to a study published earlier this year in the British Medical Journal, only 20 percent of the 822 RA patients studied were seen by a rheumatologist within the first three months after their symptoms began. The average delay was almost six months.
“My symptoms became so bad, I think in retrospect, because it took me so long to get to a rheumatologist,” says Shirley Longshore, a writer and editor who was diagnosed with RA 20 years ago. “No one seemed to suspect RA, from my primary doc to an orthopedist to an internist who diagnosed a Baker’s cyst and treated it, then was baffled by my growing discomfort and finally got me to the right specialist.” Longshore was 55 when she finally saw a rheumatologist and received her diagnosis. She credits her doctor with helping her to be fully functional and without pain within six months of her first visit to him. (Here are other common disease “mimics” that can delay an RA diagnosis.)
The Risks of a Delayed Rheumatoid Arthritis Diagnosis
Delaying treatment doesn’t just mean that you’ll be in pain for longer (over-the-counter medications often aren’t very helpful in treating RA pain), but it also means that you’re risking permanent damage to your joints.
The consequences of leaving RA untreated, according to Dr. Bykerk, include “joint damage, permanent loss of function, deformity, potential heart disease complications, loss of work, and depression.”
In short, the sooner you see a specialist and get the right diagnosis, the sooner you can start treatment that will keep you active, healthy, and pain-free. Since RA is the most common type of inflammatory arthritis rheumatologists tend to see, most specialists will have plenty of experience treating RA. Ask your primary care doctor and any acquaintances who have RA for recommendations. Learn more about what a rheumatologist is here.
Here are some tips to help you make the most of that first visit to a rheumatologist:
1. Come prepared with your health history
You are more than just your joint pain. Any and all medical conditions that have affected you in the past might be relevant to your current condition. Keep a list with the names and dates of any illnesses and surgeries you’ve had. Bring a list of what medications you take — prescription, over-the-counter, vitamins, alternative/herbal remedies — and their doses. Write down anything you can think of that might be relevant in your family’s medical history, too. Did anyone in your family have a rheumatic disease (such as osteoarthritis) or autoimmune condition (like lupus)? Ask your primary care doctor for a copy of your medical record, as well any relevant images (such as X-rays) or lab results.
2. Be able to describe your symptoms in a clear, detailed manner
Much of your first visit will be spent talking to your rheumatologist, who will have lots of questions about your symptoms. “Jot down some points about how it started, where it affects you, what medications you have taken and tried,” says Dr. Bykerk. Think about which words best describe your symptoms. Is the pain sharp or dull? Stabbing or throbbing? Aching or burning? How bad is the pain on a scale of 0 to 10?
The doctor will also want to know when your symptoms started, how often you experience them, what makes them better or worse, and what provides relief. Also tell the doctor of any other health problems you’re experiencing, since RA can affect many body functions. Symptoms like rashes, itching, dry mouth or eyes, fevers, fatigue, and problems sleeping may all be related to RA.
3. Make sure your visit includes a physical exam
While the conversation with the rheumatologist is vital, the physical exam is equally important. Be skeptical of a doctor who simply talks to you and then looks at images or lab results without actually examining your joints. “The physical evaluation for RA includes both the small and large joints in the upper and lower extremities,” says John M. Davis, III, MD, a rheumatologist at the Mayo Clinic in Rochester, Minnesota.
The doctor is looking to see and feel if your joints are hot, red, or swollen or if there are nodules. They may press a joint to see if it hurts when touched that way. They might ask you to bend, flex, or stretch to see if your movement has been compromised. And they may compare the same joints on both sides of the body, since RA is usually symmetrical (although not always in the early stages).
4. Expect lab tests and imaging
“Blood tests are helpful and often important,” says Dr. Davis. “Tests would consist of a complete blood count and chemistries, ESR/CRP [erythrocyte sedimentation rate and C-reactive protein, which can indicate inflammation], rheumatoid factor [proteins produced when the immune system attacks healthy tissue], anti-CCP [anti-cyclic citrullinated peptide, which can indicate bone damage], and sometimes other tests depending on the history and differential diagnosis.”
In addition, the doctor might want to test the synovial (joint) fluid by extracting a sample with a needle. And they will probably order X-rays of the hands and feet to check for erosions (bone damage). In some cases, an MRI or ultrasound may be recommended, too.
5. Consider bringing someone to take notes for you
“Depending on the amount of information available, the doctor might start explaining the disease process and treatment options and likely will start some treatment,” says Dr. Bykerk. Especially if your hands are compromised, it may be difficult for you to quickly write or type what your doctor is saying. And unless you have an incredible memory, important information might be lost or forgotten. Bring along a trusted friend or family member to be your scribe. You could also ask your doctor if it’s okay to record the advice on your phone for review later.
6. Become an active participant in your care by asking astute questions
Dr. Bykerk recommends asking your rheumatologist some of the following questions:
- How widespread or severe is the inflammation?
- Do I have joint damage already?
- What’s my prognosis?
- Where can I read reputable information about RA?
- Are there education or support groups I can attend?
- If I have a side effect from my treatment who should I speak with in order to adjust my meds?
Adds Dr. Davis: “Ask about the results and meaning of the tests, alternative diagnosis possibilities, and questions about benefits/risks of recommended initial treatments.”
Depending on your age and stage in life, you may have questions about getting pregnant, worries about continuing your fitness routine, or concerns about taking medications for many years. Make a list in order of importance to you, since you may not have a chance to get everything answered on the first visit.
7. Don’t leave the office without knowing the next steps
It’s possible that you will get a diagnosis and a prescribed treatment at your first visit. Or you may need to wait for test results and make another appointment. Whether you’ve received a diagnosis or not, or been given a prescription or not, the journey doesn’t end there. Before you leave, ask what happens next: when you’ll get lab test results, when you should come in for a follow-up appointment, how quickly you can expect relief from any treatment you’ve been prescribed.
8. Switch doctors if you aren’t happy with your first appointment
RA is a chronic disease that requires frequent doctor visits, so your connection with your rheumatologist is very important. Find a doctor you can have a good, ongoing relationship with. Don’t hesitate to switch to another physician if you don’t feel comfortable with the first one you see.
“RA has to be managed for life, so it’s really important that you work together with your doc to get the medications right, and that you stay connected with regular visits for monitoring meds and treatment,” says Longshore. “I have a really wonderful rheumatologist, and I listen to his guidance and follow it. Establishing trust on both sides, and knowing you can call on your doc, is critical to success in managing RA.” Here are signs you’re seeing the right rheumatologist.
9. Be persistent
Don’t take no diagnosis for an answer. There’s a reason you’re having symptoms, and you need to continue seeking help until you find out why. It might be RA that’s atypical and more difficult to diagnose. (This is often the case with seronegative RA, which doesn’t have the RF and anti-CCP antibodies.) Or it might be another inflammatory condition — or something completely different.
But the right diagnosis is the first step to the right treatment, and you shouldn’t give up until you find both. “I probably had RA for decades before I knew it,” says Ann Fisher-Wirth, a poet and English professor at the University of Mississippi. “I saw a doctor for my foot, saw a doctor for my shoulder. But no one put everything together until finally I got a blood test that showed I had RA. My doctor explained different treatments, and I chose methotrexate, and that has made all the difference.”
Track Your RA Symptoms with ArthritisPower
Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.