Questions to Ask Your Doctor When You Have Adult-Onset Still’s Disease

Living with adult-onset Still’s disease (AOSD) can be challenging and sometimes confusing. Even if you have been living with it for years, new questions can always come up.

Staying in touch with your healthcare team is important to help you manage your condition. A supportive team will make time and space for your questions. Create a list to guide your talks and get the answers you need. Examples of question themes that might be helpful are below.

Understanding your diagnosis

AOSD can be a difficult condition to diagnose. The symptoms often are general and overlap with those of other health issues. Your doctor will spend time ruling other issues out, and it may help to understand their thought process and the tests they give you.^1-3

• What tests do I need to help with diagnosis?
• What tests have I already gotten, and what do the results mean?
• How do you know I have AOSD? Is it possible I have something else?
• How severe is my AOSD?
• Do I need any imaging tests, like X-rays?
• Will my AOSD last for the rest of my life?
• Do I need to see a specialist?

Planning and monitoring your treatment

Each person’s treatment plan will look different based on their symptoms and severity. Starting treatment early and following the plan exactly can help prevent long-term joint damage. It can also help prevent other related health problems (complications).^2-4

• What drugs should I be taking?
• When do I take this drug? How many times a day?
• What side effects or complications should I watch out for?
• How long can I stay on this drug?
• How will we know if this drug is working?
• Do I need to take multiple drugs at once?
• What are some possible reasons to change my treatment plan?
• Do I need any special tests before starting this drug?
• Will I need regular blood tests or other monitoring during my treatment?

Communicating with your healthcare team

Even with the best-laid plans, issues can always arise. This is true for people who are new to managing AOSD and those who have had it for years. Setting expectations with your team about how to best reach them may reduce stress and uncertainty.³

• What is the best way to get in touch with you if I have questions?
• What side effects or issues should I contact you about immediately?
• How do I contact you or my team outside of regular business hours?
• How often should I be having follow-up visits or check-ins?
• Are you in touch with any of my other healthcare team members?
• Are there any experts I am missing on my team? What is the best way to find them?

Improving your quality of life

Outside of drugs and doctor’s appointments, there are other ways to manage AOSD. Overall, doing physical activity, eating a balanced diet, and seeking out mental or emotional support will help keep you as healthy as possible.^3,5

• What is the best diet for me? Should I make a plan with a dietitian or nutritionist?
• How much exercise should I be doing? Do I have any limitations?
• Will I be able to do my daily activities? Would it be helpful to have a physical or occupational therapist on my team?
• Who should I call if I am feeling overwhelmed?
• Should I add a mental health expert to my team?
• What are mental or emotional health distress signs to watch for?
• Do you know of any nearby AOSD support groups? What about any online groups?

The best questions will be tailored to your needs, and no question is off-limits. Understanding your AOSD and its treatment is key to staying well over the long term.

It is also normal to feel overwhelmed by the answers to your questions. This is especially true if you are asking many at once. Bring a notebook to write down information. You can also bring a friend or loved one along to help you keep track of what the doctor tells you.