Lupus
Learn about lupus and what we’re doing to help
What is lupus?
Lupus is a chronic (long-term) condition that can cause inflammation and pain in any part of the body. It’s an autoimmune disease, meaning that a person’s immune system attacks healthy cells and tissue by mistake. It most commonly affects the skin, joints, and internal organs, such as the kidneys and heart.
Are there different types of lupus?
Yes. There are 4 different types of lupus:
- Systemic lupus erythematosus (SLE), which is the most common form of lupus
- Cutaneous lupus erythematosus (CLE), which is limited to the skin
- Drug-induced lupus erythematosus, which is a lupus-like condition caused by certain prescription drugs
- Neonatal lupus, which is a rare condition affecting infants of women who have lupus
Different types of lupus are characterized by the body parts that are affected by inflammation. For example, cutaneous lupus erythematosus (CLE) is a type of lupus that affects the skin, leading to rashes and sores. But often, joints and vital organs are also affected, resulting in systemic lupus erythematosus (SLE) — the most common type of lupus. In some people who have CLE, it can eventually progress to SLE.
What’s it like to live with lupus?
Lupus is an unpredictable disease, and so no two patients will have the same experiences with it. Different organs can be involved and the flare-up of symptoms can vary in frequency and intensity. That’s why it can be difficult to get a diagnosis, to decide the best course of treatment, and to know what to expect over the course of the disease.
Because symptoms can be vague – such as weakness and fatigue – close friends and even healthcare professionals sometimes doubt their authenticity, which can be frustrating for the person who has lupus.
People with lupus can also end up feeling isolated because they find it difficult to socialize due to their symptoms, which are generally ‘invisible’, and friends and family may not fully appreciate the burden of the illness.
The good news is that patient advocacy groups are working tirelessly to try to improve the quality of life for people affected by lupus through programs of research, education, and support. You can find out more about lupus help and resources here.
What causes lupus?
It’s thought that lupus is caused by a combination of genetic and environmental factors. This means you may have an inherited predisposition for lupus which is triggered when you come into contact with something in your environment.
Who does lupus affect?
According to the Lupus Foundation of America, it’s estimated that 1.5 million Americans, and at least 5 million people globally, have a form of lupus. But some groups of people are more likely to develop the condition than others. For example, 90% of people with lupus were assigned female at birth and most people with lupus develop the disease between the ages of 15-44.
People of Afro-Caribbean and Hispanic/Latin heritage are also more susceptible. In fact, both of these groups are more likely to experience severe symptoms compared with other groups. African-Americans are also more likely to develop lupus at a younger age. But recent findings show that these groups are currently underrepresented in lupus clinical trials. That’s one of the reasons why our ongoing research is so important — we need to understand not only how lupus affects everybody, but also why some people are disproportionately affected.
What are some of the signs and symptoms of lupus?
Lupus is an autoimmune disease that can affect many different parts of the body, leading to a wide variety of symptoms. These symptoms can be mild or severe. They often come and go in periods of illness known as flares.
Some of the most common lupus symptoms include:
Many people with lupus experience inflammation that affects their skin and hair, such as:
If you suspect you might have lupus, it’s important to speak to a doctor about the symptoms you’re experiencing.
Our lupus research
Research is needed to develop additional treatment options—treatments that have the potential to not only control, but also decrease the impact of the disease with relatively limited side effects.
An area of research that is being explored by scientists is the use of biologic therapy for people with lupus. A biologic therapy is designed to mimic proteins that naturally occur in the human body. In this way, a biologic can target specific parts of the immune system and prevent an overactive immune response. More research is needed to determine if biologic therapies can help people living with lupus. That’s why clinical trial volunteers are so important – to help us learn more about lupus and potentially develop new treatment options.
What could a Biogen lupus trial involve?
Before you join a trial, the trial team first confirm your eligibility with some health assessments. Then, if you’re eligible and choose to take part in a lupus trial, you’ll need to attend several appointments so that the trial team can closely monitor your health and condition with health assessments, such as:
Questionnaires
To measure how your lupus is affecting your daily activities and mood
Skin photography
Areas of the body that have skin lesions related to lupus will be photographed at different time points throughout the trial and will be used to monitor your response to the investigational treatment
Other assessments will be involved. A full list of these, and all other requirements around taking part in a trial, would be fully discussed with you before you made a decision about whether to join a trial or not.
And remember, if you join a clinical trial, there are many rules and regulations in place to protect your rights, safety, welfare and personal data. You can learn more about this on the about clinical trials page.
What is the role of a caregiver in a lupus clinical trial?
Someone who cares for you, for example a partner, sibling, other family member, close friend, or professional caregiver, may take part in the trial with you. This may be to help you get to and from your appointments and support you throughout the trial. Or, they might be asked to help monitor any changes in your condition and report them to us. Visit our section on caregivers for more information about this role.
Why might lupus trials include a placebo group?
When researching potential new treatments for diseases, trials must compare the investigational drug with something in order to prove its effect. That’s why many lupus trials will have one or more groups of people taking the investigational drug and another group taking a placebo.
In some trials, participants – assigned to receive either the investigational drug or the placebo – may continue with their standard of care therapies.
How can I get involved?
To find new lupus treatment options, we must first test investigational drugs in clinical trials. But in the same way that diseases like lupus can impact groups of people in different ways, how medicine works in the body can also vary for people of different races and ethnicities. That’s why it’s so important that we have diverse representation of all people in our clinical trials.
You can learn more about the importance of diversity in clinical trials, and Biogen’s efforts to make an impact, here.
Recruiting lupus trials:
Click to view full study details including trial locations.
Biogen is also pursuing the development of potential new treatments through collaborations with other companies. You may not find those trials on Biogen Trial Link. To learn more about these collaborations, please visit our pipeline page on biogen.com.
Help and resources
There are organizations that offer information and support for people living with lupus and their families. Below are some groups where you can find out more about lupus, connect with others, or learn about the latest research. Remember, this list of organizations does not imply an endorsement from Biogen or the listed organization.
