Long-distance lupus care

Lupus Foundation of America

Resource Content

In lupus, symptoms can occur without warning. Side effects from new medications also can cause concerns. If your rheumatologist is not nearby, what do you do? This short list is a good start.

1. Know the office policy for reaching your rheumatologist. 

Usually you should start by calling the office. If it’s after hours—night, weekends, or holidays—you’ll reach the answering service. Their job is to direct you to the doctor “on call.” However, your rheumatologist may want you to call her or him directly, no matter what day or time it is. If you’re not sure, ask at your next appointment, or call the office today. If you’re supposed to call your doctor directly, keep that number in your emergency contacts list. Smartphone apps can help you keep medical information handy. You also can find and download a medical alert wallet card at no charge (various cards reviewed here), or create your own.

2. Know how to describe your symptoms. 

When you reach a healthcare provider you’ll be asked to explain what’s happening and how you’re feeling. Be as clear and detailed as possible. For example: “There’s a feeling of pressure in my chest and a sharp pain when I inhale, and it’s worse when I’m lying down” instead of “There’s a pain in my chest.” It’s also possible that your symptoms are related to a new medication; your pharmacist can give you information that will help you decide whether it’s an emergency or not, and you can then give the details to the healthcare provider (and to your rheumatologist).

3. Know whom to see locally. 

The best way to be sure you can see a doctor quickly is to have a local primary care provider (PCP) or general practitioner (GP) or internist (internal medicine specialist). To give you the best care, this doctor should have a good understanding of how lupus affects you (as well as any other health complications that you may have). Your PCP should also know how to reach your rheumatologist for advice.

4. Know how to take care of yourself between rheumatology appointments. 

One of the best ways to manage lupus is to have healthy habits. Be sure you recognize your lupus flare triggers; for most people these include too much direct sunlight, not enough sleep, new or additional stress, infection, surgery, and pregnancy. Keep up with all recommended health check-ups: vaccinations, teeth cleaning, reproductive health, skin, and vision (see a retina specialist if you take Plaquenil or another antimalarial medication). Try to maintain a healthy diet and commit to some form of daily exercise. Comply with your lupus treatment plan, especially when it comes to taking your medications as prescribed (and avoid tobacco, excessive alcohol use, and recreational drugs). Last, but not least, do your best to have good mental health. Practice deep breathing, spend time in nature, indulge in daily laughter, think positive thoughts, say “no” to self-blame, and count your blessings. You may find you’re taking those long-distance trips less and less often!