Things Rheumatology Health Care Providers Wish Their Patients Knew

Living with a rheumatic condition can be both challenging and life-altering. As advocates for their patient's well-being, rheumatology providers can help patients navigate the complexities of rheumatic disease. The following insights can help you make the most of your visits with your rheumatology provider.

We Want Our Patients to Live Well and Flourish
Living well with an autoimmune disease is challenging. However, rheumatology health care providers want to partner with you to meet your goals and create plans for successfully navigating the ups, downs and uncertainty that come with having an autoimmune disease.

A few tips to be successful with this may include:

• Create treatment plans with your rheumatology health care provider that are centered on your own goals and linked to your life goals. These could be completing your education, having a family, or having and maintaining meaningful work or hobbies.
• Discuss your goals with your rheumatology provider and see what plans can be developed to achieve them!

Patients Can Overome Uncertainty with Time, Knowledge, and Ongoing Communication
When patients are diagnosed with a rheumatic disease, they often confront uncertainty or doubt about how to handle ongoing symptoms. Symptoms may occur in an unknown frequency, duration, or pattern. Other times, they may stay the same as what you experienced around your initial diagnosis. As rheumatology providers, our goal is to identify whether your symptoms are from the underlying autoimmune disease or something else. Over time, you and your rheumatology provider will learn your specific autoimmune disease nuances and gain knowledge about what has worked, and what hasn’t, which may lead to better management strategies. Regular, ongoing visits with your rheumatology provider are necessary to best manage your symptoms. Through these visits, you and your provider can expand your understanding of your disease and continue to tailor your treatment plan.

A few practical ways to address these issues include:

• Keep your rheumatology provider and care team aware of your symptoms through online portals, telephone calls and regular visits.
• Ensure you are up to date on labs. Many rheumatology medications require labs every 12 weeks for safety monitoring. Your provider will communicate if labs are needed prior to a medication refill. If you are almost out of a medication and do not have an upcoming visit, call or message your rheumatology care provider or their team. We do not want you to run out of your medication and will communicate if labs are needed prior to refill, so avoid as best you can waiting until the last minute to reach out!
• To improve your care provider’s treatment plan, be sure to communicate details about your symptoms and be specific if you can.
  • When did symptoms start?
  • What symptoms were/are present?
  • Are they getting better, worse, or staying the same?
  • Where are you experiencing symptoms (one finger, big toe, all over)?
  • What have you already done to address this (medications, rest, etc.)?
  • Is there anything functional that you are unable to do because of this (work, exercise, walk, etc.)?
  • What has worked in the past to alleviate these symptoms?
• Keep regularly scheduled visits (in person or via telehealth). Many rheumatic diseases are challenging to treat via telehealth, so if you have new symptoms that could be related to your condition, consider scheduling an in-person visit.

Knowing when, how and what to communicate is important. And remember, if you’re ever in doubt, reach out!