When you first get a new diagnosis — any diagnosis — there are a million and a half things on your mind. The to-do lists of specialists to connect with, appointments to make, family members to loop in can be a bit daunting. So, when you get confirmation that you have Rheumatoid Arthritis (RA), you may realize really quick that there’s a lot of things you don’t know yet (and, in some cases, you don’t even know the extent of what you don’t know!) and that can certainly be intimidating.
But that’s why your doctors are there and they want to make the experience as comforting and scare-free as possible. So, to get a bit more insight into what exactly your doctor wants you to know and the conversations they hope to have with patients about their RA diagnosis, SheKnows talked to a few real life doctors to share the questions they really wish they’d ask at their appointments.
“How can a diagnosis of RA affect my ability to have children or care for my family?”
“I point this one out because I think planning is important and I personally discuss concerns related to fertility, childbearing and pregnancy, as RA has varying outcomes related to pregnancy,” Dr. Brett Smith, rheumatologist with Blount Memorial Hospital in Maryville, Tennessee tells SheKnows. “Additionally, many of the medications are not compatible with pregnancy or breastfeeding, so I want women to be educated about their options and understand RA does not have to impede their ability to have children, breastfeed or raise their families.”
“How does my diet play a role in control of RA?”
“I think diet is undervalued in many individuals with RA. Emerging research suggests our gut bacteria play an important role in disease risk and in symptoms,” according to Dr. Smith. “There have been positive studies noting the benefits of dietary changes, such as going vegan, on joint pain and overall disease activity. Additionally, western diets (heavy in animal products) can increase the risk of cardiovascular disease and the risk of heart attack is increased in patients with RA.”
“What resources can I use to improve my understanding about RA?”
“I think a good resource goes a long way in regard to patient and family education.There is a lot of information out there and many things to choose from,” Dr. Smith adds. “The American College of Rheumatology’s website, as well as the Arthritis Foundation, are two good places to start. Patients should understand what they type into a search bar matters, as the search engines will sculpt the results based on what the patient is looking for on repetitive searches, not necessarily what is the correct answer scientifically.”
“Should I be screened for RA if a family member has it?”
“I think this is a debatable topic. In the US, we wouldn’t necessarily screen asymptomatic individuals. However, genetics are about 1/3 of the risk for developing RA, so it does carry significant weight,” Dr. Smith says. “In Europe, there are ‘early arthritis clinics’ which can identify people earlier in the course. The earlier RA is caught by labs, history or exam, the better the outcome and many times, the less medication required to control it.”
“What the timeline is in terms of symptoms and treatment?”
“For some patients, hearing about diagnosis, treatment options, and side effects all at once can be overwhelming, sometimes discouraging people from making decisions and starting therapy. However, depending on the patient and the circumstances, decisions don’t necessarily have to be made immediately,” Dr. Arundathi Jayatilleke, rheumatologist with Temple Health in Philadelphia, PA tells SheKnows. “It’s good to understand not only the options but the urgency and the potential drawbacks of delaying therapy. For some people, the risks of delaying treatment are lower, but it is variable.”
“What should I expect from treatment?”
“Sometimes providers prescribe a medication and schedule a follow-up appointment in three months, but different therapies take differing amounts of time to work. Patients should know when they can expect to see a benefit and what they can do to help control their symptoms in the meantime,” Dr. Jayatilleke says. “They should also ask what they should do if the therapy doesn’t work as anticipated or if they have to stop the medication due to side effects: should they call, schedule another appointment, or wait until the scheduled follow-up? That way, people understand the expectations of how well things will work and how long it may take, as well as how to manage if things don’t work well, so that they don’t assume they have to wait months to make a change.”
“What role will physical therapy and exercise play in managing symptoms?”
“Some people are reluctant to increase physical activity due to fear of pain, while others are eager to exercise and do more. While generally we encourage people to be as active as possible, it’s useful to get an idea of whether there are any limitations on exercise or any precautions or signs that people should dial back on their activity,” Dr. Jayatilleke adds. “For some people, there are no specific limitations, but it’s good to understand if certain activities might be painful. For others, joint inflammation may limit activities short-term, but this may not be a lasting restriction. Finally, physical therapy and occupational therapy can be helpful for different symptoms, and people should ask about the utility and timing of these therapies as well.”
“What is my disease activity?”
“This is typically graded as remission (no activity) low, moderate and high. Knowing disease activity helps doctors determine the best treatment options to determine benefit and risk. Higher disease activity indicates increased risk of damage, deformity and disability,” Dr. Scott Zashin, rheumatologist with the Dallas Rheumatology Practice tells SheKnows. “Lower disease activity less risks of these outcomes. As a result, we tend to be more aggressive in our treatment approach with high disease activity. There a number of metrics Rheumatologists use to calculate disease activity. Examples include DAS 28, HAQ and CDAI.”
“How should I navigate my insurance?”
“For Medicare recipients and those who have a choice in their insurance, please ask me what insurances are easy to work with and which are not,” Dr. Robert Hylland, rheumatologist with Rheumatology Centers of Western Michigan tells SheKnows. “When it comes to expensive medications and investigative studies frequently needed for optimal management of the patient with RA, some insurances are impossible to work with, and the patient will suffer because of it.”
“What would you do if you were in my shoes?”
“In 42 years I’ve never had that question asked. It opens the door for divulging all of the wisdom and teachings I have accumulated in managing Rheumatoid Arthritis for thousands of patients. It signals an openness to change that is so very important for achieving the best results,” Dr. Hylland adds. “I can share the characteristics of those patients who have the best outcomes and those with the worst. It opens up conversations about diet and dieting, smoking and it’s troublesome effects on RA, defining realistic expectations, making necessary adjustments in working routines and home activities, explaining my reasoning behind my medication choices and the importance of adequate rest and an optimistic attitude. Such a conversation builds confidence in the relationship between doctor and patient and that confidence is fundamental in obtaining the best results.”
If you or someone you love is in the midst of navigating a new diagnosis with Rheumatoid Arthritis, remember your doctors are the a great resource for knowledge — if you can, take advantage of what they know and start having these important conversations early to better set yourselves up as a powerful healthcare team.