Making the most of your visits to the clinic
Navigating your health journey can be challenging, especially when dealing with complex diagnoses and treatments like steroids that can have a wide range of side effects.
Dr John Stone, a Professor of Medicine at Harvard Medical School and a rheumatologist at Massachusetts General Hospital, suggests that open communication with your doctor is essential.
Here's a guide to help you have more effective conversations with your clinician and prepare to advocate for yourself and better manage your health.
You can also watch Dr Stone’s talk on the topic of doctors’ appointments in our film.
Ask about timelines and steroid-sparing alternatives
When you start taking steroids, it’s important to discuss your treatment plan with your doctor right away. Dr Stone emphasizes the importance of understanding the likely duration of your steroid use.
"How long do you think I will need to be on steroids?"
Knowing whether your treatment will last weeks, months or longer can help you prepare mentally and physically. If the answer is more than a couple of months, you may wish to ask about alternative treatments.
"Should we be thinking about a steroid-sparing medication?"
Dr Stone advises considering strategies to reduce and eventually stop steroid use early in your treatment plan.
Protect yourself against side effects
Steroids, while effective, can have significant side effects, such as weight gain, bone density loss, infection risk, diabetes and an impact on mental health. Dr Stone highlights the importance of discussing these potential issues.
"What should I be doing to protect myself against the potential side effects of steroids?"
Developing a proactive plan with your doctor can help reduce these risks. This may involve appointments with other specialists such as an ophthalmologist, nutritionist or endocrinologist.
Be honest about your symptoms
Patients often want to please their doctors or ‘put on a brave face’, but it’s vital to be open about how you’re feeling. Steroids can affect your body, mind and emotions in ways that significantly impact your quality of life and should be addressed.
Dr Stone says: "If you are having trouble sleeping, feeling irritable, struggling with appetite control or noticing weight gain, make sure to bring these up."
Talk about what’s causing your symptoms
Sometimes it’s challenging to tell the difference between symptoms caused by your underlying disease and those caused by steroids. Clarifying this is crucial for effective treatment as it can help you and your doctor tailor your care plan more effectively.
Dr Stone says: "It’s important to talk about whether your symptoms are due to the underlying disease or the treatment itself."
Prepare a list ahead of your appointment
Making a list of your concerns can be very useful.
Going to your doctor with a short list of concerns can help ensure that you cover everything that’s important to you. Steroids should be a high priority on this list, especially if they are impacting your daily life. Present these as your agenda at the start of the appointment so you can ensure your biggest concerns are addressed.
Dr Stone says: "Having a short list of things you would like to address, with steroids at the top if they are causing issues, is very useful."
The Sam Journey wizard was developed to help you log your concerns and provide a template for what to discuss during your next appointment.
The bottom line
Effective communication with your doctor is key to managing your health, especially when dealing with treatments like steroids. By asking the right questions and being honest about your experiences, you can work with your doctor to ensure the best possible outcomes.
Above all, your doctor is there to help you. As Dr Stone says, "Your doctor and you want the same things: to control your inflammatory disease and prevent the side effects of steroids. Working together through open dialogue is the best way to achieve these goals.”
Remember, always consult your doctor before making any changes to your medication or lifestyle to ensure the best care for your specific health needs.