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One of the most stressful things a person can experience is receiving a positive diagnosis from a doctor, no matter what it is. Your mind can race in a million different direction, and perhaps immediately jump ahead to worst-case scenarios. It's easy to become overwhelmed with questions for the doctor, and to have a hard time deciding where to begin.
Doctors are trained to handle these situations and they have a wealth of experience and information on the subject. It's likely they've heard every question imaginable, and if they don't have every answer, they can at least point you in the right direction. In the case of chronic illness, including rheumatoid arthritis, you'll be working together on long-term treatment and management, making it even more vital that you feel comfortable asking questions and advocating for yourself.
To help weed through the chaos and fear that can dwell on your mind after finding out you have rheumatoid arthritis, PEOPLE spoke to rheumatologists about what questions need to be at the top of your list to help manage your diagnosis and take charge of your health.
How severe is my rheumatoid arthritis?
It it key to identify any pains and problems you are experiencing at the time of your diagnosis. As Katherine Wu, M.D. and rheumatologist with the Palo Alto Medical Foundation, tells PEOPLE, rheumatoid arthritis can cause problems in different parts of the body such as the eyes, heart, lungs, and skin, and "monitoring for any new symptoms can help your doctor diagnose this earlier."
The Mayo Clinic explains that rheumatoid arthritis occurs when "your immune system mistakenly attacks your own body's tissues," which affects your joints' lining and causes painful swelling that can potentially lead to bone erosion and joint deformity. The more severe your case, the greater the impact it can have on your body, so your doctor needs to be explicitly aware of any symptoms you're experiencing to help determine how much the arthritis has progressed, and which treatment(s) makes the most sense.
"Patients with rheumatoid arthritis do have an increased risk of certain health issues," says Laura Cappelli, M.D., rheumatologist and assistant professor of medicine at the Johns Hopkins University School of Medicine. "There are many things patients and their doctors can do to decrease these risks, including addressing risk factors for heart disease and making sure they are up to date with vaccinations."
What are my options for treatment?
As mentioned, treatment will depend on how far along your arthritis has developed. Your rheumatologist's goal is to minimize as many of your symptoms as possible. The ultimate goal is to achieve remission, but treatment should start, at a minimum, by getting your rheumatoid arthritis to a place that is actually manageable.
As Wu explains, there are dozens of medications approved for R.A., with new ones being studied every year. "With your doctor, you can find the best medication that works for your rheumatoid arthritis," she says. You may have to try a few different medications before ultimately finding the one that works best for you, but that only furthers the importance of being candid with your doctor about your experience so they can find the best solution for you.
Cappelli believes in being open with to your doctor about what you are trying to achieve with treatment: "We treat rheumatoid arthritis with effective medications for a variety of reasons, including preventing permanent joint damage, avoiding disability, and improving quality of life and physical function," she says. "Sharing your goals for the future with your doctor will allow you to work together to meet them."
The most challenging part can be waiting for treatment to take effect. It can be a lengthy process that requires an immense amount of patience. As Cappelli points out, "most long-term medications for rheumatoid arthritis take some time to become fully effective. It is helpful for patients to know about this as they judge their response to treatment."
What lifestyle changes should I make?
It is important to see rheumatoid arthritis as a major part of your life, and as such, make appropriate modifications to your lifestyle to maximize the efficacy of your treatment. Simply taking medication won't be enough for long-term progress. It's about acknowledging your diagnosis and finding ways to adjust your life to make it a manageable part of your existence, which will require compromises.
"Some activities, such as cigarette smoking, have been linked to increased risk for rheumatoid arthritis and higher disease activity," says Wu - which further illustrates the importance of being completely candid with your doctor about your health and lifestyle as they help you come up with a treatment plan. "It is a good idea to discuss with your doctor if there are any lifestyle changes you can make to help keep your rheumatoid arthritis controlled."
"Many patients want to learn about ways to help their rheumatoid arthritis in addition to medications," adds Cappelli. "Your doctor will know what sort of lifestyle modifications have been studied in rheumatoid arthritis and whether they have been beneficial."
What is the expected quality of life?
Upon finding out you're going to have to live with rheumatoid arthritis, it's natural to be curious about any long term effects. Once you've gotten your case under control, will you be able to maintain your same quality of life? According to Dr. Anca Askanase, associate professor of medicine at Columbia University's Vagelos College of Physicians and Surgeons and Director of the Columbia University Lupus Center, most people with rheumatoid arthritis do go on to live normally.
That said, Askanase points out that people with rheumatoid arthritis have a higher risk of heart disease as well as lower life expectancy, so it is imperative to take any lifestyle changes you discuss with your doctor seriously. Unfortunately, as much as you may be able to live normally with R.A., Askanase notes that it is a chronic disease that cannot be cured, so it cannot afford to go ignored. The CDC recommends joining a self-management education class. At the very least, you should make every attempt to stay healthy and active after receiving a diagnosis; Askanase suggests using Arthritis.org to help inform you further.
Will I be able to have children?
For many women, a major concern is how rheumatoid arthritis can affect pregnancies, but Megan E. B. Clowse, M.D., M.P.H, with the Duke University School of Medicine's Division of Rheumatology & Immunology assures that your rheumatoid arthritis does not have to interfere with your desire to have a family.
"We’ve known for decades that many women with rheumatoid arthritis actually feel better pregnant than not pregnant, though about half can have active rheumatoid arthritis during pregnancy," she tells PEOPLE. She also cautions that while many R.A.-treating medications can be taken safely during pregnancy, "it is important to talk with your rheumatologist about the safety of your medications in pregnancy before you conceive," as several can cause harm to a developing fetus.
Clowse also says that women with rheumatoid arthritis can safely breastfeed on many of these medications. "Many women experience an increase in joint pain after delivery, so I recommend taking effective medications to treat rheumatoid arthritis during this important time," she adds. "Having severe joint pain while taking care of an infant can be a huge challenge – fortunately, you don’t need to pick between taking care of your baby and taking care of yourself."
Additionally, women currently treating R.A. are able to safely take birth control. Clowse recommends MotherToBaby as a great resource to learn more about pregnancy and medications for women with rheumatoid arthritis.
The most important piece of the puzzle is keeping your doctor in the loop throughout the process. "Your symptoms may also change during and after pregnancy, so your doctor may want to monitor you more carefully during this period," says Wu.
What does my diagnosis mean for my family?
Because rheumatoid arthritis is an autoimmune disorder, it does have a genetic component, and it can run in families. As a result, it's important to figure out how to share your diagnosis with your family. As Cappelli mentions, "the degree of risk to family members depends on the particular disease. Your doctor can help you discuss the risk of autoimmune disease with your direct relatives."
But as a post from New York's Hospital for Special Surgery explains, "It’s a possibility that some types of arthritis run in the family, but it’s not like diabetes, where if both parents have it, the child will have it as well." Simply having a history of R.A. in your genes doesn't automatically mean you will develop it. "Something else has to happen - some kind of environmental trigger, like a virus, for example - for someone to develop rheumatoid arthritis. In some studies, for instance, smoking, along with a genetic predisposition, has been shown to increase the risk," adds HSS.