What to Expect at Your First Rheumatologist Appointment
If you have recently been referred to a rheumatologist, or if you have been reading up on rheumatoid arthritis and it seems that your symptoms fit with this diagnosis, you likely have a lot of emotions swirling around.
Anxiety about an upcoming rheumatologist appointment
When I was referred to a rheumatologist 15 years ago, I felt anxious and afraid about what a diagnosis would mean for me, I felt worried that this referral might not lead to any more answers than my primary care doctor’s referral to an orthopedic surgeon had, and I also felt a glimmer of hope that perhaps this specialist would finally be able to tell me what was wrong with me and what we could do about it.
While I can’t tell you what your rheumatologist will say for your individual case, I can tell you what a typical first appointment with an RA specialist looks like in hopes that this may reduce at least a little anxiety.
First rheumatologist appointment: how to prepare
Medical History. Oh, the dreaded packet of multiple sheets of paper to be filled out. While you’ve likely filled these out for other doctors, here are a couple of tips for preparing for your rheumatologist’s paperwork.
Fill out medical history paperwork ahead of time
First, when you make your appointment ask if it’s possible for the office to send the paperwork to you in the mail or electronically. If you are experiencing pain in your fingers, hands, or wrists, filling out all that paperwork in one sitting at the doctor’s office can be painful. In addition, this will provide you with more time to think through all the questions and gather needed information.
If the office is unable to send you paperwork ahead of time, here are a few ways to ensure your medical history is as complete as possible for the rheumatologist: 1) gather information on whether you have any family members who have had RA or other autoimmune conditions; if possible, ask parents or aunts and uncles about any such conditions in their generation and their parents’ generation of your family tree; 2) arrive early to your appointment so that you don’t have to hurry through the paperwork; 3) if your fingers and hands are swollen and/or painful, bring an ergonomic pen. It is far more painful for me to write with a standard pen, and my penmanship suffers as well. Using a fat, ergonomic pen means I don’t have to maintain as small a grasp and gives me more to hold on to. I now keep one in my purse at all times.
Type up list of current medications and supplements
Lastly, the medical forms will ask what medications and supplements you are taking. If you already have other diagnoses, your list may be lengthy, so it can be helpful to type up a list and print it out for your visit so that the office staff can just include it with your forms rather than requiring you to write it all out. If you aren’t on so many medications that it isn’t a pain (literally) to write them all out, it can be helpful to put a note in your smartphone with all the prescriptions and dosages you are taking so that you don’t forget any of them when completing the forms.
Physical Exam. While tests will be performed (and we’ll get to that in a minute), the physical exam is the most important component of a visit to the rheumatologist. S/he will talk to you about the symptoms you are experiencing, so it is helpful if you can take some time before the appointment to reflect on your symptoms and write them down.
Think about symptoms ahead of time
In doing so, think about and document the following aspects of your symptoms: how severe they are, how frequently they occur, how long they tend to last, and whether there seems to be any pattern to their occurrence (such as time of day or any antecedent(s) you can link them to).
Assessment of individual joints
The specialist will likely then inspect your joints one by one. For instance, s/he might gently squeeze each finger joint, your elbows, knees, ankles and toe joints. The purpose of this is to determine how many joints are inflamed and how many are tender. This is important information for your rheumatologist to have, so this is not the time to put on a brave face. If there’s any discomfort when s/he presses on a joint, make sure to share how it feels, whether it’s very painful or just slightly tender. This will inform the diagnosis, so don’t hold back.
X-rays.It is likely that the rheumatologist will take some x-ray images of symptomatic joints. S/he will do this for a couple reasons: 1) the images give an inside look at your joints and will indicate whether any joint damage has already taken place, and can also show inflammation, and 2) the images provide a baseline so that your doctor can compare the images to ones s/he may take later to determine the level of progression of the disease.
Ultrasound. In addition to x-ray images, the rheumatologist may also use an ultrasound machine to get an inside look at your joints. I love the use of ultrasound for a couple of reasons: it doesn’t involve radiation and you get to view the screen along with your doctor, who can point out whether there’s inflammation and how severe it is. When the ultrasound machine is wheeled into my rheumatologist’s office, he uses it on me and then explains what he’s seeing by comparing it to images of his own hand, which do not indicate inflammation. This comparison is a helpful way for me to understand what he’s seeing.
Labwork. Lastly, the rheumatologist will request bloodwork in order to run several tests. It is important to note that while lab work can help a rheumatologist understand whether RA may be at play, it is not always possible for a diagnosis to be made on blood tests alone. This is because there is not currently a test that can indicate RA with 100% accuracy.
Be aware of what specific blood can and cannot show
In fact, as many as 30% of patients with rheumatoid arthritis are “seronegative,” which means we do not have positive results for standard RA bloodwork. I say “we” because I am seronegative, and my labwork never indicated rheumatoid arthritis until my rheumatologist had the much-less-frequently-administered Vectra test run on me. For 11 years all the standard bloodwork came back negative for RA.
However, when I had the Vectra test performed it indicated moderate RA disease activity. The Vectra test is relatively new and is not always covered by insurance, so your rheumatologist may or may not order it. I mention all of this because sometimes our community members share that they believe they have RA, but that a doctor has told them they do not have it based on lab work alone. Again, there is not currently a test that can indicate with 100% accuracy whether a patient has RA.
Why the first rheumatologist appointment matters
The process of diagnosis is often a scary, worrisome time. However, the good news is that there are a wide variety of treatment options available should your rheumatologist diagnose you with rheumatoid arthritis. While it is a chronic condition without a cure, many patients are able to find treatment options that significantly decrease their symptoms. The first step to appropriate treatment is getting an accurate diagnosis, and a rheumatologist is critically important to that process.
Did you have difficulty receiving a RA diagnosis?