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Ten-Part Video Series

Lupus, What You Need to Know

Lupus can affect many parts of the body including joints, skin, kidneys, lungs, heart, and brain. It can vary from mild to severe, and usually alternates between periods of activity and periods of reduced activity, or even remission. Lupus is manageable. With proper diagnosis, treatment, and knowledge, people with lupus can live full, productive lives. In learning about lupus and how to manage it, we recommend that you start with this ten-part video series on lupus.

Part 1: What is Lupus?

+TRANSCRIPT

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 2: When Lupus Flares Up

+TRANSCRIPT

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 3: Health Disparities

+TRANSCRIPT

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 4: Patient & Physician Relationships

+TRANSCRIPT

Patient 3: The first time I had a lupus flare, I wasn’t exactly sure what was happening to me. I was visiting my family and we spent a lot of time outdoors in the sun. My head started to hurt. I felt weak and tired. And my joints and muscles ached. I had a rash on my face, chest, and arms and I also had sores in my mouth. My doctor later told me that I was experiencing a lupus flare and that I must wear sunblock and that there are many other potential triggers of lupus flares.

Patient 1: I noticed that when there is a lot of stress in my life, my flares are worse and last longer. Two years after I was diagnosed with lupus, I lost my job and got really stressed out. Even though I had been stable for a while, a few days after losing my job, I couldn’t get out of bed. My body hurt all over– my knees, feet, and hands were swollen. My hair started falling out and I lost my appetite. Now I understand how important it is to try to control things that make me feel stressed, see my doctor regularly, and take my medications like the doctor told me.

Speaker: Sometimes the immune system can attack itself and cause problems. This is what doctors often call a lupus flare. And the treatment here can be to increase or add medications to lessen the immune response.

Next, keep in mind that medication, important as it may be in our treatment and management of lupus, can also have potential side effects. It is important you speak with your doctor and pharmacist to learn what side effects your medications may have and what to look out for.

Since lupus is a disease that affects the immune system and many patients with lupus are on medications that may lower the immune system, infections can occur. This can often feel or look like lupus activity.

It is important you communicate with your doctor if your symptoms do not improve with treatment.

Finally, remember that you can develop problems or medical conditions just like everyone else. Just because you have lupus doesn’t mean you can’t have other medical conditions that affect the way you feel. It’s important to identify and write down all the things that make you feel poorly so that you know what you need to tell your doctor so he or she can determine whether you are sick or if you are having a lupus flare.

Sometimes, the issue is clear and can be resolved quickly. Other times, tests and follow-up visits may be needed. Either way, the information you give them will be critical.

Lupus can be confusing. It can seem overwhelming because so many different things can affect how you feel. And unfortunately, there is no quick way to know what issue is causing certain symptoms. However, you are your best resource. Over time, you will learn to distinguish these issues. And again, it will be important to communicate what you have learned with your rheumatologist, and your primary care or general physician.

Part 5: Fatigue & Rest

+TRANSCRIPT

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 6: Pain & Management

+TRANSCRIPT

Patient 3: The first time I had a lupus flare, I wasn’t exactly sure what was happening to me. I was visiting my family and we spent a lot of time outdoors in the sun. My head started to hurt. I felt weak and tired. And my joints and muscles ached. I had a rash on my face, chest, and arms and I also had sores in my mouth. My doctor later told me that I was experiencing a lupus flare and that I must wear sunblock and that there are many other potential triggers of lupus flares.

Patient 1: I noticed that when there is a lot of stress in my life, my flares are worse and last longer. Two years after I was diagnosed with lupus, I lost my job and got really stressed out. Even though I had been stable for a while, a few days after losing my job, I couldn’t get out of bed. My body hurt all over– my knees, feet, and hands were swollen. My hair started falling out and I lost my appetite. Now I understand how important it is to try to control things that make me feel stressed, see my doctor regularly, and take my medications like the doctor told me.

Speaker: Sometimes the immune system can attack itself and cause problems. This is what doctors often call a lupus flare. And the treatment here can be to increase or add medications to lessen the immune response.

Next, keep in mind that medication, important as it may be in our treatment and management of lupus, can also have potential side effects. It is important you speak with your doctor and pharmacist to learn what side effects your medications may have and what to look out for.

Since lupus is a disease that affects the immune system and many patients with lupus are on medications that may lower the immune system, infections can occur. This can often feel or look like lupus activity.

It is important you communicate with your doctor if your symptoms do not improve with treatment.

Finally, remember that you can develop problems or medical conditions just like everyone else. Just because you have lupus doesn’t mean you can’t have other medical conditions that affect the way you feel. It’s important to identify and write down all the things that make you feel poorly so that you know what you need to tell your doctor so he or she can determine whether you are sick or if you are having a lupus flare.

Sometimes, the issue is clear and can be resolved quickly. Other times, tests and follow-up visits may be needed. Either way, the information you give them will be critical.

Lupus can be confusing. It can seem overwhelming because so many different things can affect how you feel. And unfortunately, there is no quick way to know what issue is causing certain symptoms. However, you are your best resource. Over time, you will learn to distinguish these issues. And again, it will be important to communicate what you have learned with your rheumatologist, and your primary care or general physician.

Part 7: Lupus Fog

+TRANSCRIPT

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 8: Depression

+TRANSCRIPT

Patient 3: The first time I had a lupus flare, I wasn’t exactly sure what was happening to me. I was visiting my family and we spent a lot of time outdoors in the sun. My head started to hurt. I felt weak and tired. And my joints and muscles ached. I had a rash on my face, chest, and arms and I also had sores in my mouth. My doctor later told me that I was experiencing a lupus flare and that I must wear sunblock and that there are many other potential triggers of lupus flares.

Patient 1: I noticed that when there is a lot of stress in my life, my flares are worse and last longer. Two years after I was diagnosed with lupus, I lost my job and got really stressed out. Even though I had been stable for a while, a few days after losing my job, I couldn’t get out of bed. My body hurt all over– my knees, feet, and hands were swollen. My hair started falling out and I lost my appetite. Now I understand how important it is to try to control things that make me feel stressed, see my doctor regularly, and take my medications like the doctor told me.

Speaker: Sometimes the immune system can attack itself and cause problems. This is what doctors often call a lupus flare. And the treatment here can be to increase or add medications to lessen the immune response.

Next, keep in mind that medication, important as it may be in our treatment and management of lupus, can also have potential side effects. It is important you speak with your doctor and pharmacist to learn what side effects your medications may have and what to look out for.

Since lupus is a disease that affects the immune system and many patients with lupus are on medications that may lower the immune system, infections can occur. This can often feel or look like lupus activity.

It is important you communicate with your doctor if your symptoms do not improve with treatment.

Finally, remember that you can develop problems or medical conditions just like everyone else. Just because you have lupus doesn’t mean you can’t have other medical conditions that affect the way you feel. It’s important to identify and write down all the things that make you feel poorly so that you know what you need to tell your doctor so he or she can determine whether you are sick or if you are having a lupus flare.

Sometimes, the issue is clear and can be resolved quickly. Other times, tests and follow-up visits may be needed. Either way, the information you give them will be critical.

Lupus can be confusing. It can seem overwhelming because so many different things can affect how you feel. And unfortunately, there is no quick way to know what issue is causing certain symptoms. However, you are your best resource. Over time, you will learn to distinguish these issues. And again, it will be important to communicate what you have learned with your rheumatologist, and your primary care or general physician.

Part 9: Physical Appearance & Self-Esteem

+TRANSCRIPT

Patient 1: It started in the winter when my fingers would turn blue in the cold and I had pain in my hips, knees, shoulders, and hands.

Patient 2: I worked out all the time at the gym and I thought maybe I just needed to slow down a little, so I waited before seeing a doctor.

Patient 3: I had high fevers and my joints were stiff, my hands were red and swollen, and it hurt to grab the steering wheel when I drove the car.

Patient 2: Although I would get a good night’s sleep, I woke up still not feeling rested and my joints hurt all the time.

Patient 3: I felt unbearable pain and ended up in the Emergency Room.

Patient 1: At first the doctors gave me anti-inflammatories thinking I had arthritis, but I found out that I have lupus. I didn’t even know what lupus was.

Speaker: Did you know that there are over 1.5 million Americans living with lupus? Even so, many people haven’t heard of the disease or if they have they’re not sure what it is and what can be done to treat it. That’s what we’ll be talking about in this program.

Lupus is a chronic condition of the immune system. The immune system is your body’s natural defense against harmful invaders like bacteria and viruses. It is a complex system with many ways of fighting off attacks. But lupus, for reasons we do not fully understand, causes the immune system to attack itself. This is called an autoimmune condition.

When this occurs in multiple parts of the body, it is called systemic lupus erythematosus or SLE. SLE is the most common form of lupus and will be the emphasis of this program, but other forms of the disease exist. Some people with only skin involvement have cutaneous lupus which is sometimes called discoid lupus. Approximately 10 percent of people who have cutaneous lupus will develop SLE. In drug-induced lupus, some drugs have been reported to cause lupus-like symptoms in a small number of people. These symptoms disappear when the medication is stopped.

When SLE causes the immune system to attack itself, you might experience many different symptoms. Some of these are Painful or swollen joints. Sores in your mouth or on your skin that do not heal. Rash across your nose and cheeks. A fever of over 100° F for several days. Sensitivity to sun or light that causes a skin rash to appear or get worse. Fatigue and weakness for days or weeks at a time, even after plenty of sleep. Or sudden, unexplained hair loss.

As you learn about the problems that can occur in lupus, it is important to remember that no two people with lupus are exactly alike. Just because someone else with lupus has kidney issues does not mean you will have problems with your kidneys now or in the future. The symptoms and frequency of symptoms can be different in each person and can range from mild to severe. Many of the symptoms we just mentioned are found in other common conditions, which is why it can be difficult to diagnose people with lupus.

Blood tests are helpful in detecting lupus, but there is no single test to identify this disease. If your doctor suspects you may have lupus, you may be referred to a rheumatologist. Rheumatologists specialize in treating conditions like lupus and can often confirm your diagnosis. Keep in mind, sometimes several visits are required before enough information is gathered to make an accurate diagnosis.

Lupus can affect people of any age or sex. However, 9 out of 10 people with lupus are women and most of those develop lupus between the ages of 15 and 45. Also, certain racial and ethnic groups are at higher risk for developing lupus. This includes Americans with African, Asian, or Hispanic ancestry as well as certain Native American tribes.

Part 10: Nutrition & Excercise

+TRANSCRIPT

Patient 3: The first time I had a lupus flare, I wasn’t exactly sure what was happening to me. I was visiting my family and we spent a lot of time outdoors in the sun. My head started to hurt. I felt weak and tired. And my joints and muscles ached. I had a rash on my face, chest, and arms and I also had sores in my mouth. My doctor later told me that I was experiencing a lupus flare and that I must wear sunblock and that there are many other potential triggers of lupus flares.

Patient 1: I noticed that when there is a lot of stress in my life, my flares are worse and last longer. Two years after I was diagnosed with lupus, I lost my job and got really stressed out. Even though I had been stable for a while, a few days after losing my job, I couldn’t get out of bed. My body hurt all over– my knees, feet, and hands were swollen. My hair started falling out and I lost my appetite. Now I understand how important it is to try to control things that make me feel stressed, see my doctor regularly, and take my medications like the doctor told me.

Speaker: Sometimes the immune system can attack itself and cause problems. This is what doctors often call a lupus flare. And the treatment here can be to increase or add medications to lessen the immune response.

Next, keep in mind that medication, important as it may be in our treatment and management of lupus, can also have potential side effects. It is important you speak with your doctor and pharmacist to learn what side effects your medications may have and what to look out for.

Since lupus is a disease that affects the immune system and many patients with lupus are on medications that may lower the immune system, infections can occur. This can often feel or look like lupus activity.

It is important you communicate with your doctor if your symptoms do not improve with treatment.

Finally, remember that you can develop problems or medical conditions just like everyone else. Just because you have lupus doesn’t mean you can’t have other medical conditions that affect the way you feel. It’s important to identify and write down all the things that make you feel poorly so that you know what you need to tell your doctor so he or she can determine whether you are sick or if you are having a lupus flare.

Sometimes, the issue is clear and can be resolved quickly. Other times, tests and follow-up visits may be needed. Either way, the information you give them will be critical.

Lupus can be confusing. It can seem overwhelming because so many different things can affect how you feel. And unfortunately, there is no quick way to know what issue is causing certain symptoms. However, you are your best resource. Over time, you will learn to distinguish these issues. And again, it will be important to communicate what you have learned with your rheumatologist, and your primary care or general physician.

We value your feedback.

We value your feedback.

FAQs

What is lupus?

Lupus is a chronic disease, meaning it is a long term disease that doesn’t go away, but has to be managed. Lupus affects the immune system and is called an autoimmune disease. The immune system’s job is to fight foreign invaders, like germs and viruses. But in autoimmune diseases, the immune system is out of control and mistakenly attacks healthy tissue.

Lupus can affect many parts of the body including joints, skin, kidneys, lungs, heart, and brain. It can vary from mild to severe, and usually alternates between periods of activity and periods of reduced activity, or even remission. Lupus is manageable. With proper diagnosis, treatment, and knowledge, people with lupus can live full, productive lives. In learning about lupus and how to manage it, we recommend that you start with the video on the left, a ten-part series on lupus.

What causes lupus?

The immune system is the body’s defense system. A healthy immune system protects the body by making antibodies (blood proteins) that attack foreign germs and cancers. With lupus, the immune system misfires and produces antibodies that attack healthy tissue. As the attack goes on, other immune cells join the fight. This leads to inflammation and abnormal blood vessels (vasculitis). These antibodies then end up in cells in organs, resulting in further damage.

The exact reason for this autoimmune response is not clear. It most likely results from a mix of inherited tendencies and things in your environment. These include viruses, sunlight and drug allergies. People with lupus may also have an impaired process for clearing old and damaged cells from the body, which causes an abnormal immune response.

Who gets lupus?

Anyone can get lupus. But 9 out of 10 people who have it are women. African American women are 3 times more likely to get lupus than women of European descent. It is also more common in Hispanic American/Latina, Asian American, and Native American women.

Both African Americans and Hispanic Americans/Latinas tend to develop lupus at a younger age and have more symptoms at diagnosis, including kidney problems. They also tend to have more severe disease than women of European descent. For example, African American patients have more seizures and strokes, while Hispanic American/Latina patients have more heart problems. We don’t understand why some people seem to have more problems with lupus than others.

Lupus is most common in women between the ages of 15 and 45, the child-bearing years. Scientists think a woman’s hormones may have something to do with getting lupus. But it’s important to remember that men and older people can get it, too.

It’s less common for children under age 15 to have lupus. One exception is babies born to women with lupus. These children may have heart, liver, or skin problems caused by lupus, but with good care, most women with lupus can have a normal pregnancy and a healthy baby.

What type of doctor do I need to see?

A rheumatologist (ROOM-uh-TALL-uh-jist) is a doctor who specializes in treating diseases that affect the joints and muscles, like lupus. You may want to ask your regular healthcare provider for a referral to a rheumatologist. In some cases other specialists, such as a dermatologist, a doctor who specializes in treating diseases that affect the skin, may be involved in the diagnosis and treatment of lupus.

How is lupus diagnosed?

Lupus can be hard to diagnose. There is no definitive test for lupus, and the broad range of symptoms can mimic other common diseases. The American College of Rheumatology provides guidelines for doctors in the diagnosis of lupus, including signs and symptoms. If your doctor finds that you have signs and symptoms of lupus, and can find no other reason for these, he/she may suspect lupus.

If lupus is suspected, you will need a series of blood tests to confirm the diagnosis. The most important blood test measures antinuclear antibodies (ANA) in the blood. If you have a positive ANA, you will likely undergo further testing to confirm, or rule-out lupus. These further tests include screenings for the presence of certain antibodies and proteins in the blood.

Will I need medication for lupus?

Your treatment will depend on your symptoms. Your healthcare provider may give you aspirin or a similar medicine to treat swollen joints and fever. Creams may be prescribed for a rash. For more serious problems, stronger medicines are used. Your healthcare team will choose a treatment based on your symptoms and needs.

Always tell your healthcare team if you have problems with your medicines. Let them know if you take herbal or vitamin supplements. Your medicines may not mix well with these supplements. You and your healthcare team can work together to find the best way to treat all of your symptoms. Read more about treatment here.

How can I cope with lupus?

Start by building a strong healthcare team. Your rheumatologist or primary care physician will help you find the healthcare professionals you need. Your lupus healthcare team may include a psychologist, occupational therapist, physical therapist, dermatologist, and dietitian. It is important to follow up with your healthcare team on a regular basis, even when your lupus is quiet and all seems well. Ask your healthcare team about ways to cope with fatigue. If you’re depressed, medicine and counseling can help.

Build a solid support network of close family and friends. Consider support groups and counseling. Dealing with a long-lasting disease like lupus can be hard on your emotions. Getting enough rest and taking care of yourself is important. Don’t be afraid to ask for help. Practice setting limits and saying “no” when demands of others put your health in jeopardy.

Take care of yourself. Eat well. Get plenty of rest. Take your medications as prescribed. Pay attention to your body and slow down or stop before you’re too tired. Learn to pace yourself and spread out your work and other activities. Remember that fatigue is one aspect of the disease, and don’t blame yourself for it.

Stay active. Exercise is important for health and stress relief. Talk with your doctor about what type of exercise is appropriate for you. Stay involved in hobbies and social activities that you enjoy. Some people find meditation and yoga helpful in managing stress.

Learn about lupus. People who are well informed and take part in planning their own care report less pain. They also may make fewer visits to the doctor, have more self-confidence, and remain more active. Use the resources here at The Lupus Initiative as a starting point.

This information is provided for general education only. Individuals should consult a qualified healthcare provider for professional medical advice, diagnosis and treatment of a medical or health condition.

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What is Lupus?

Systemic lupus erythematosus, referred to as SLE or lupus, is a chronic (long-term) disease that causes inflammation — pain and swelling. It is sometimes called the “great imitator,” because people often confuse lupus with other health problems due to its wide range of symptoms.

In addition to affecting the skin and joints, it can affect other organs in the body such as the kidneys, the tissue lining the lungs (pleura) and heart (pericardium), and the brain. Most patients feel fatigue and have rashes, arthritis (painful and swollen joints) and fever.

Lupus flares vary from mild to serious. Most patients have times when the disease is active, followed by times when the disease is mostly quiet — referred to as remission. Yet, there is much reason for hope. Improvements in treatment have greatly improved these patients’ quality of life and increased their lifespan.

Young patient being comforted

Signs & Symptoms

The earlier lupus is diagnosed, the better. Early diagnosis improves quality of life and saves lives, so it’s important to know the signs.

read more . . .
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Treatments

We have created a comprehensive list of medications and medication types used to treat lupus.

read more . . .
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Resources

Here you will find a collection of literature, video and other media designed especially for people with lupus.

read more . . .

Clinical Trial Search

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Acknowledgments

This educational resource on lupus and health disparities was developed and produced by The Lupus Initiative® in partnership with the U.S. Department of Health and Human Services, Office of Minority Health, The Lupus Initiative Consortium and a host of experts in rheumatology, health disparities and lupus research – many of whom are named below. Others, not named here, and members of The Lupus Initiative Consortium, provided feedback at every stage of development which was integral to the quality of these materials. We hope you will use and share them liberally.

Lupus What You Should Know: Patient DVD

Contributors and Editors

Cristina Drenkard, MD. Assistant Professor of Medicine, Division of Rheumatology, Emory University School of Medicine, Assistant Professor of Epidemiology, Emory University Rollins School of Public Health

S. Sam Lim, MD, MPH. Associate Professor of Medicine, Division of Rheumatology, Emory University School of Medicine

Kim Schofield. Emory University School of Medicine, Grady Hospital Lupus Clinic

We value your feedback and we’re happy to answer your questions

+Test
Lupus can be confusing. It can seem overwhelming because so many different things can affect how you feel. And unfortunately, there is no quick way to know what issue is causing certain symptoms. However, you are your best resource. Over time, you will learn to distinguish these issues. And again, it will be important to communicate what you have learned with your rheumatologist, and your primary care or general physician.
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