If you have rheumatoid arthritis (RA), you see your rheumatologist at regularly scheduled appointments. This sub-specialty internist is the most vital member of your care team, providing you with an analysis of your condition and its progress as well as insights on the latest treatments.
But tracking the autoimmune malfunction can be a challenging task. Symptoms such as swelling and painful joints come and go, and new problems develop. Treatments can also stop working. It’s a lot to remember, and you might find you forget to ask important questions during your appointment. Here are some things to keep in mind that your rheumatologist wishes you’d ask.
Initial diagnosis
The time of diagnosis can cause anxiety for many, though some also feel a sense of relief that the condition has been identified and can be treated. While you’re taking in all this new information, it’ll be helpful to begin keeping a care journal or log that you bring with you to all appointments and use to track your condition at home. During your initial diagnosis appointments, ask your rheumatologist these important questions:
1. What is my outlook?
Though RA behaves differently in all patients, it’s important to understand some of the commonalities. The disease is chronic, meaning it will almost certainly last your lifetime. However, chronic doesn’t mean unrelenting. RA has cycles and can go into remission.
Newer treatments, such as disease-modifying antirheumatic drugs (DMARDs) and biologics, save patients from lasting joint damage and allow them to enjoy full lives. Ask your doctor about your outlook, and try to take note of the good news along with the more worrisome information.
2. Is it hereditary?
Elyse Rubenstein, MD, rheumatologist at Providence Saint John’s Health Center in Santa Monica, California, points out that it’s important to consider RA’s impact on your family. If you have children, you may want to ask whether they may develop RA.
While the heritability of RA is complex, there does appear to be a greater likelihood of developing RA if someone in your family has it.
3. When can I exercise again?
Fatigue, pain, sleeplessness, and depression can interfere with getting regular exercise. Even once you’re diagnosed, you might be afraid to exercise because of the impact on your affected joints.
But movement is critical to managing and coping with RA. A 2011
4. How long until my meds work?
For decades prior to the 1990s, nonsteroidal anti-inflammatory drugs (NSAIDs) and corticosteroids were the primary prescriptive solutions for people with RA. They provide relatively fast relief for swelling and pain and are still in use. (The prescription of opiate pain relievers is on the decline due to their high rate of addiction. The Drug Enforcement Administration has ordered a reduction in their rate of manufacture effective 2017.)
However, two treatments —DMARDs, of which methotrexate is the most common, and biologics — have a different approach. They impact the cellular pathways leading to inflammation. These are excellent treatments for many people with RA, because stopping inflammation can prevent permanent damage to joints. But they do take longer to work. Ask your doctor for their experience in using these drugs.
Existing diagnosis
If you’ve been managing your RA for some time, you probably have an established routine for your doctor appointments. You arrive, have your vitals taken and blood drawn, and then meet with your doctor to discuss your status and any new developments. Here are some questions to consider bringing up:
5. Can I get pregnant?
About 90 percent of people with RA will take the DMARD methotrexate at some time. It’s generally considered safe for regular use and has manageable side effects.
However, this go-to RA drug is also an abortifacient, meaning it will cause pregnancy to terminate. You should always use birth control when taking methotrexate. And you should always ask your doctor if you’re considering getting pregnant. “Really, we should be telling patients about pregnancy without their asking,” says Stuart D. Kaplan, MD, chief of rheumatology at South Nassau Communities Hospital in Oceanside, New York.
If you’re a woman with RA, you can have a healthy pregnancy (you may even enjoy a break from RA symptoms) and healthy babies. Just make sure to consult your rheumatologist regularly.
6. What if my meds stop working?
NSAIDs and corticosteroids help people with RA control pain and swelling, while DMARDs slow disease progression and can save joints. You were most likely prescribed these medications soon after you were diagnosed. But they might not always work.
The need for additional or different drugs could be temporary. For example, during a flare, you could need additional temporary pain relief. You may also need to change or add treatments over time.
Talk to your rheumatologist throughout your treatment to understand how to tell when a treatment is no longer working and how to plan for a change in treatment when needed.
7. What new treatments are available?
RA treatment research and development is rapidly advancing. In addition to older DMARDs such as methotrexate, newer drugs called biologics now are available. These work similarly to DMARDs, blocking cellular inflammation, but are more targeted in their interaction with your immune system.
Stem cells might hold promise as an RA treatment. “Patients who are not responding to traditional drug treatment and are looking to potentially reduce their reliance on medication should ask their physician about stem cell therapy,” says Andre Lallande, DO, medical director of StemGenex Medical Group.
8. What is triggering my flares?
The remission-flare pattern of RA can feel particularly unjust. One day you’re feeling fine, the next you can hardly get out of bed. You can take some of the sting out of this injustice if you establish why you get flares — at least then you have an idea of what to avoid or can be alert to an oncoming flare.
Keeping a care diary might help you track flare triggers, and so will consulting with your rheumatologist. Ask about their experience with other patients. Together, refer to their record of your appointments to identify what might be activating disease symptoms.
9. What about drug interactions?
The array of RA medicines can be overwhelming. Even if you don’t develop RA comorbidities such as cardiovascular problems or depression, you’ll likely take a prescription anti-inflammatory, a corticosteroid, at least one DMARD, and possibly a biologic. These drugs are considered safe to take together, but if you’re wondering how your meds might interact with other substances, ask your doctor.
10. Do I really have to take my medications forever if I feel well?
Perhaps you’re lucky and your RA has entered an extensive remission. You find you’re able to move as you once did, and your pain and fatigue have subsided. Could it be your RA is cured? And could you stop taking your meds? The answer to both these questions is no.
RA still has no cure, even though modern therapies can bring relief and prevent further damage. You must continue to take your medications to be well. “Once remission is achieved on medications, patients will maintain low disease activity or in some cases no identifiable disease activity at all by continuing the medications. When medications are stopped, there is a high likelihood of disease activation and flares occurring again,” says Rubenstein.
However, your doctor may consider lowering the dose of your medication and/or simplifying your drug combination with careful monitoring.
The takeaway
Your rheumatologist is your companion on what you hope will be a healthy journey treating your RA. That journey is long and can get very complicated as you add and subtract treatments and as your disease flares, remits, or develops new traits. Keep a care journal to write down your own experiences, list your medications, and track symptoms. Also use this notebook as a place to list questions for your next rheumatology appointment. Then don’t hesitate to ask them.