Lupus & You Webinar Recap: Practical Tips for Your Journey

Living with lupus can mean navigating symptoms, medications, appointments, lifestyle changes and the uncertainty that can come with a chronic disease. Having reliable information, a strong health care team and support from others who understand can make a difference along the way.

During our latest Lupus & You: Practical Tips for Your Journey webinar, lupus expert Dr. Donald Thomas shared practical information to help people with lupus better understand and manage their disease. The program also featured lupus warriors Erica Doe, Chris Eckett, Janice Mason and Dana Taylor, who shared their lived experiences and lessons they have learned while navigating life with lupus. 

Top Takeaways from the Webinar:  

• Small, consistent habits can support your lupus care. Protecting yourself from UV exposure, staying active, eating well, getting enough sleep, managing stress and avoiding smoking are all practical ways to support your overall health alongside your medical treatment.
• Being organized and involved in your care can help you feel more prepared and confident. Keeping an updated medication list, tracking important health information, attending regular appointments and making sure your doctors communicate can help you stay on top of your care.
• Lupus may change how you do things, but it does not have to stop you from pursuing what matters to you. Learning to adapt, adjusting expectations when needed and finding strategies that work for you can help you continue working toward your goals and living your life.
• Knowledge and self-advocacy are powerful tools throughout your lupus journey. Learning about lupus, asking questions, speaking up about your needs and trusting your own experiences can help you become a stronger partner in your care. 

Our Health Education Specialists also collected our speakers’ answers to attendees' questions from the event:

What can people with lupus do if pain or medications are making it difficult to sleep?

Sleep problems can have many causes, including pain, stress, medications and lupus itself. Identifying what interferes with your sleep is an important first step. If pain keeps you awake, better pain management may help improve sleep. Certain medications can also interfere with sleep, and changing when a medication is taken may sometimes help.

Getting enough quality sleep is an important part of managing lupus and supporting your overall health, so ongoing sleep problems should not be ignored. If sleep problems continue, work with your medical team to identify the cause and possible solutions.

"There's something called sleep hygiene," said Dr. Donald Thomas. "Google 'sleep hygiene techniques', there's a list of things that you can improve in your daily life that can improve your sleep quality at night. If that doesn't work, ask your doctor for a referral to a sleep specialist to find out if you have a sleep problem that may be keeping you from sleeping well."

Is genetic testing recommended for people with lupus or their family members?

Genetic testing is not currently recommended to predict whether most people will develop lupus. Lupus is a complex disease associated with many different genes, and having a family history or genes associated with lupus does not mean that someone will develop the disease.

If lupus or other autoimmune diseases run in your family, focus on the things you can control to support your overall health, such as avoiding smoking, protecting yourself from UV exposure, staying active and maintaining other healthy lifestyle habits.

"Genetic testing is not helpful at this point," Dr. Thomas said. "Most people born with the genes for lupus will never get lupus, so testing for the genes really isn't going to be helpful. But if we get to the point where there's genetic treatments, for example, for preventing lupus or treating it, then then they would become clinically available."

Why is it important for people with lupus to be mindful of smoking, secondhand smoke and alcohol use?

Smoking and secondhand smoke can have an impact on lupus in addition to the other health risks associated with tobacco. Smoking has been linked to increased lupus activity and flares and may make some lupus medications less effective. Avoiding smoking and limiting exposure to secondhand smoke are important steps you can take to support your health.

Alcohol affects everyone differently and may interact with certain medications or health conditions. Understanding how alcohol may interact with your medications is important when living with lupus.

What should people with lupus know about hydroxychloroquine (HCQ) and vitamin D?

Hydroxychloroquine (HCQ) is an important medication for many people living with lupus. It can help reduce flares and lower the risk of long-term organ damage. Regular eye exams are important while taking HCQ so your health care team can monitor rare changes that can affect the eyes.

Vitamin D is important for bone, immune and overall health. People with lupus may be more likely to have low vitamin D levels, especially because limiting UV exposure is an important part of managing lupus. Vitamin D levels can be checked through a blood test, and supplementation may be recommended when levels are low.

How can exercise help people living with lupus?

Regular physical activity can have important benefits for people living with lupus. Exercise can help reduce fatigue, improve sleep, support heart health and may help lower inflammation. Dr. Thomas discussed research showing that even people with lupus who experience significant fatigue can benefit from becoming more physically active over time.

Pain and fatigue can make getting started difficult, so the goal is to start where you are and gradually build your activity over time. Finding movement that works for you and that you can do consistently can be an important part of supporting your overall health.

"My experience has been if I get an injury and I can't exercise," said LFA Support Group Facilitator and Lupus Warrior Chris Eckett,"and that definitely brings on a lupus flare, and I can feel all the joint pain and the fatigue and everything coming back. And if I start exercising, it goes away. So even if it's just a low level of exercise, whatever I can handle makes a difference."

How can people with lupus work more effectively with their doctors and make sure their health care team is communicating?

Lupus can affect many different parts of the body, which may mean having several specialists involved in your care. Do not assume that every provider automatically receives information from your other appointments. Ask specialists to send copies of their notes, lab results and other important information to your rheumatologist so everyone involved in your care knows what is happening.

It is also important to continue seeing your rheumatologist regularly, even when you are feeling well. Lupus can sometimes affect the body without causing noticeable symptoms, and regular appointments and monitoring can help identify potential problems earlier.

"If you're going to fight for anything or for anyone, fight for yourself," said LFA Support Group Facilitator and Lupus Warrior Janice Wilson. "If anybody's going to advocate for you for the rest of your life, it must be you. You have to believe in yourself."

"Seeking knowledge and being proactive in your own home health care is one of the strongest things you could ever do for yourself," Dr. Thomas said.

Why is daily sun protection so important for people with lupus even when you're indoors or it isn't sunny outside?

Ultraviolet (UV) light can trigger lupus symptoms and flares. Sunlight is the greatest source of UV exposure, but smaller amounts of exposure can also add up overtime. Making sun protection part of your everyday routine can help reduce your overall exposure.

Use sunscreen regularly and consider additional protection such as wide-brimmed hats, protective clothing and seeking shade when outdoors. Remember that UV exposure can still occur on cloudy days and through some windows, so sun protection is important even when you may not think you are getting much sun.

What information should people with lupus keep track of to help manage their care?

Keeping your own health information organized can help you stay involved in your care and make sure your health care providers have accurate information. Keep an updated list of your medications that includes the medication name, dose and how often you take it, along with any medication allergies or intolerances. Bring this list with you to medical appointments and update it whenever something changes.

It can also be helpful to keep copies of important lab results, medical records and information from specialists, particularly if you see multiple providers or change doctors. Having this information readily available can help you communicate with your health care team and be prepared if you need unexpected medical care.

How can connecting with others help you cope with the emotional challenges of living with lupus?

Living with lupus can affect more than your physical health. It can be difficult to adjust to changes in your health, manage uncertainty and cope with the ways lupus may affect your work, relationships, goals and daily life. Connecting with people who understand what you are going through can provide emotional support, practical advice and reassurance that you are not navigating lupus alone.

The lupus warrior panelists emphasized the value of finding support, being open about what you need and learning from others who have faced similar challenges. Support can come from family and friends, mental health professionals, lupus support groups or other people living with lupus. Finding the type of support that works for you can help you cope, adapt and continue moving forward.

"Having a strong community is so important," said LFA Support Group Facilitator and Lupus Warrior Erica Doe. "While friends and family may not fully understand what [one] experiences living with lupus, they do know that it can be debilitating. Community support can carry you through those really, really difficult moments."

Lupus & You is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and managing the disease. You can find slides and additional resources from this Lupus & You here.

Our next Lupus & You will take place on September 16, 2026, focused on Disability (SSDI) and Making Work Work. Find more information about upcoming and past Lupus & You events here. 

Authored by:

Ashley Holden, MEd, CHES

Ian Decker , Health and Communications Writer

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

The Lupus Foundation of America and our health education specialists have answered some of your most common questions. The provided answers are for educational and information purposes only. Consult with your doctor/health care team for medical advice.