Ten Tips For Thriving with Lupus

Lupus is a complex disease. Patients want to know more about what they can do to make their lives better and we as rheumatologists and rheumatology healthcare professionals seek to educate our patients as much as we can. With decreased access to specialty care nationally and an increased uncertainty about where to go for reliable information online, this can be a challenge. Here’s a list of things I wish all patients living with lupus knew about managing their condition.

1. Be proactive. Build a strong relationship with your rheumatologist and other members of your care team, which can include pharmacists, social workers, therapists, skin or kidney doctors, nurses and physical therapists. Know your medications, write them down or bring them to the visit. If you’re on plaquenil/hydroxychloroquine, make sure to keep your regular eye doctor visits. If you move, have copies of your labs and doctors’ notes for a smoother transition. Show up to visits and communicate your concerns regarding your disease and medications. If something isn’t working – from the medication to your transportation to visits - communicate it so we can solve the problem together. Don’t be afraid to utilize your resources!
2. Limit your exposure to the sun. UV light can cause photosensitive rashes and can also lead to flares involving your joints and internal organs. It’s impractical to avoid the sun completely, so doing things that limit exposure are helpful. They include using sunscreen (SPF 50 or more) and reapplying, doing errands outside of the sun’s peak hours (which are 10:00 AM-4:00 PM), wearing clothing with built-in sun protection, or using hats and umbrellas. Also, be cognizant of exposure to artificial UV sources like photocopy machines and tanning beds.
3. Stay up to date with vaccinations. Patients with lupus are on medications that help them, but they also can render them more prone to infections. One of the ways to combat this is by ensuring your vaccinations are up-to-date. Take a look at this CDC information to familiarize yourself with the adult vaccination schedule and use it to discuss options with your doctor. Speaking of vaccines, the incidence of cervical cancer is higher in patients with lupus so I encourage all of my patients 45 years old and under, to get the HPV vaccine and regular Pap smears if it applies.
4. Maintain a healthy lifestyle. There’s also increased cardiovascular disease risk in patients with inflammatory diseases, including lupus. So smoking cessation, regular exercise, a healthy diet and weight loss are major keys to prevention. Incorporating the Mediterranean diet and anti-inflammatory foods into your meals is a great way to start making dietary changes. Exercise also helps to boost your mood and reduce fatigue, the risk of osteoporosis and stress/anxiety.
5. Prioritize sleep and self-care. Focusing on stress management and sleep hygiene are important steps for overall lupus health. Chronic pain/fibromyalgia is strongly associated with lupus; stress and lack of quality sleep can cause or worsen this. These are aspects of life that are often overlooked and underestimated for their impact on wellness. We service our car because we deem it necessary for it to function. Self-care is the service we give ourselves to function better.
6. Discuss family planning with your healthcare team. The majority of patients with lupus are women of child-bearing age so it’s important to address reproductive concerns. Women with lupus can safely get pregnant and the complication risk is decreased if your lupus is controlled for at least six months. Be candid about your reproductive goals and ask questions. Some medications are not safe in pregnancy (see medication lists) so it’s good to be aware of this and discuss long-term options if you’re planning to get pregnant in the near future. Also, between your PCP, gynecologist and rheumatologist, come to a personalized decision on what contraception is best for you. I love this handout on birth control for women with lupus and share it with my patients. It also comes in Spanish.
7. Closely monitor kidney health. Make sure you’re having your urine tested about two times a year or more to screen for protein and keep an eye on your blood pressure, which can become elevated in kidney disease. The kidney is commonly involved in lupus complications and it’s important to screen for disease, which means looking for problems before they become too bad. We now have more options for lupus kidney disease (lupus nephritis) so it’s best to detect any issues early so we can treat it.
8. Collaborate with your rheumatologist on the use of steroids. It’s your rheumatologist’s goal that you get on as low a dose of steroids as possible. This should be your goal too. There are a lot of side effects associated with steroids, though when needed, they do a great job of calming down your disease so don’t be afraid of it either. Just be mindful of their use and discuss alternatives with your doctor that can be added to your regimen to help lower the dose of steroids or stop it altogether. The American College of Rheumatology has a great patient resource page that tells you more about your medications including steroids: Prednisone (Deltasone) Information.
9. Stay informed and empowered. Advocate for yourself and others and connect with those living with lupus as well as their caretakers and supporters. You learn more, help with policy changes and pay it forward to others that have lupus.
10. Connect with others. Community can also help to prevent depression and feelings of isolation. When your mind and soul win, your body has a better chance of winning. I encourage everyone to join a local support group, attend an awareness event, i.e., Lupus Awareness Month in May, or join a fundraiser or walk. You may see other doctors like me walking beside you. The Lupus Foundation of America is one way to get started.

Living with lupus can get overwhelming but take it one day at a time and recognize that no two people with lupus are the same so no two management solutions will look the same. These steps are a roadmap for you to discuss and personalize your lupus care with your healthcare team. We want to help you succeed!