Rheumatologists (and other autoimmune specialists) have extensive education and experience working with autoimmunity. But they don’t always share their considerable knowledge with us. Good questions give us agency to participate in our health journey and when we take an active role in our health care, we are more likely to thrive and less likely to fall through the cracks of an overburdened health care system.
Although autoimmunity is chronic and will likely last your lifetime, that doesn’t mean it will never ease up. Lupus (and other autoimmune diseases) can go into remission. This is why I’m an advocate for autoimmune patients having the information they need to live the best quality of life they can. If you are wondering what to ask your doctor, here are 11 suggestions to get you started.
1.Is it hereditary? Are there things I can do to prevent this happening to my children?
2. Should I be exercising and what kind of exercise would be most helpful for me at this point?
3. Is it safe for me to get pregnant?
4. What side effects should I expect from this medication?
5. Are there any long-term risks from taking this medication?
6. How long should this medication take to start working?
7. Are there any drug interactions that I need to be aware of? Should I avoid other drugs or foods while on this medication?
8. Are there any other treatment options?
9. Is there anything I should avoid that will make my symptoms worse?
10. Can I go off of the medication if I begin to feel well? What happens if I go into remission?
11. What are the most important things I can do to avoid a flare-up?
12. What should I expect in terms of quality of life? Do your other patients do well with this course of treatment?