If you have lupus, you probably have a lot of questions. Lupus is not a simple disease that has an easy cure. You can’t just take medicine and it will go away. People who live and work with you can hardly know you have the disease. Lupus does not have a series of obvious signs that people can see. You may know something is wrong, although it may take some time to diagnose.
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Lupus comes in many shades. It can affect many people of different races, ethnicities and ages, both men and women. It can manifest like other diseases. The symptoms of the disease vary from person to person.
The good news is that you can get help and fight against Lupus. Learning about it is the first step. Ask questions. Talk to your doctor, family and friends. People looking for answers will be more likely to spot them. This booklet can help you get started in learning about the disease.
What is Lupus
?Lupus is an autoimmune disease. Your body’s immune system is like an army of hundreds of soldiers. The job of the immune system is to fight against foreign substances in the body, like pathogens and viruses. But in autoimmune diseases, the immune system goes out of control. It attacks healthy tissue, not pathogens.
You cannot get lupus from another person. It’s not cancer, and it’s not related to AIDS.
Lupus is a disease that can affect many parts of the body. Everyone reacts differently. A person with lupus may experience swollen knees and a fever. Another person may always feel tired or have kidney problems. Another person may develop a rash. Lupus can involve the joints, skin, kidneys, lungs, heart, and/or brain. If you have lupus, it can affect two or three parts of your body. Often, a person does not exhibit all possible symptoms.
There are three main types of lupus:
Systemic lupus erythematosus is the most common form. It is also sometimes called SLE, or just lupus. The word “systemic” means that the disease can involve many parts of the body such as the heart, lungs, kidneys, and brain. Symptoms of SLE can be mild or severe. Lupus erythematosus mainly affects the skin. A red rash may appear, or the skin of the face, scalp, or elsewhere may change color. Drug-induced lupus is caused by some medications. It is the same as SLE, but the symptoms are usually milder. Usually, the disease goes away when the medication is stopped. The number of men with drug-induced lupus is increasing because drugs that cause lupus (such as hydralazine and procainamide) are used to treat heart conditions, and these conditions are more common in men.
What Are the Signs and Symptoms of Lupus
?Lupus can be difficult to diagnose. It is often confused with other diseases. For this reason, lupus is also known as the “ingenious imitator.” Signs of lupus vary from person to person. Some people have only a few signs; while others have more signs.
Common signs of lupus are:
Red rash or color change on the face, usually with a butterfly on the nose and cheeks Joint pain or swelling Unexplained fever Chest pain when breathing deeply Swollen glands Extreme fatigue (always feeling tired) Hair loss/beard /abnormal hair (mainly on the scalp) Pale or purple fingers or toes like colds or stress Sensitivity to sunlight Low blood cell counts Depression, trouble thinking, and/or problems about memory.
Other signs are sore mouth, unexplained seizures, hallucinations, repeated miscarriages, and unexplained kidney problems.
What is a Disease Outbreak
?When symptoms appear, it is called a “disease flare”. These signs can come and go. You may have swelling and a rash for a week and no symptoms after. You may find that symptoms flare up after you’ve been out in the sun or after a hard day at work.
Even when you take medicine for lupus, you may notice times when your symptoms get worse. Learning how to recognize a flare-up can help you take steps to deal with it. Many people feel very tired or have pain, rash, fever, upset stomach, headache, or dizziness just before a flare-up. Steps to prevent flare-ups, such as limiting time in the sun (and artificial lights in the home) and getting enough rest and quiet, can also help.
Preventing Disease Outbreaks
Learn how to recognize a flare-up. Talk to your doctor. Try to set realistic goals and priorities. Limit your exposure to sunlight (and artificial lights in the house). ).Maintain a healthy diet.Develop coping skills to help manage stress.Get enough rest and quiet.Exercise when possible.Build a system. support system by being around people you trust and make you comfortable (family, friends, etc.).
What Causes Lupus
?We do not know what causes lupus. There is no cure, but in most cases lupus can be controlled. Lupus sometimes runs in families, which suggests that the disease may be hereditary. However, genes are not the whole cause. Environment, sunlight, stress, and certain medications can trigger symptoms in some people. Others have similar genetic backgrounds but may not show signs or symptoms of the disease. Researchers are trying to figure out why.
Who Has Lupus
?Anyone can get lupus. But we do know that more women get lupus than men. African-American women are three times more likely to have lupus than white women. It is also more common in Hispanic and Portuguese/Latino, Asian, and Native American women.
African-Americans, Hispanics, and Portuguese/Latinos both tend to have lupus at a younger age and have more symptoms at diagnosis (including kidney problems).
They also tend to be more severely ill than whites. For example, African-American patients have more seizures and strokes, while Hispanic and Portuguese/Latino patients have more heart problems. We don’t know why some people seem to have more lupus problems than others.
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Lupus is most common in women between the ages of 15 and 44. This is when most women are able to give birth. Scientists think that a woman’s hormones may contain something related to lupus. But it must be remembered that men and the elderly can also get this disease.
Children under the age of 15 are less likely to get lupus. Except for babies born to women with lupus. These children may have heart, liver, or skin problems caused by lupus. With good care, most women with lupus can have a normal pregnancy and give birth to a healthy baby.
Diagnosis: How Can You Find Out If You Have Lupus?
Medical history. Telling your doctor about your symptoms and other problems you’ve had can help them understand your condition. Your medical history can provide clues about your condition. Use the list at the end of this booklet to keep track of your symptoms. Share this list with your doctor. Ask family or friends to help you look at the checklist or ask your doctor questions. Complete a physical exam. Your doctor will look for a rash and other signs that something is wrong. Lab tests of blood and urine samples. Blood and urine samples often show if your immune system is overactive. Skin or kidney biopsy. In a biopsy, tissue removed through a minor surgical procedure is examined under a microscope. Skin or kidney tissue examined in this way may show signs of an autoimmune disease.
What Will The Doctor Do
?Go see a doctor. They will talk to you and record your history of health problems. Many people have lupus for a long time before finding out they have it. It is important that you tell your doctor or nurse about your symptoms. This information, along with a physical exam and lab test results, will help your doctor determine if you have lupus or something else.
A rheumatologist is a doctor who specializes in treating diseases that affect joints and muscles, such as lupus. You may want to ask your regular doctor for a referral to a rheumatologist. In some cases, a dermatologist, a doctor who specializes in treating diseases that affect the skin, may be involved in diagnosis and treatment. There is no single test that can show that you have lupus. Your doctor may have to do some tests and study your medical history. Diagnosing lupus can take some time.
Do I Have to Take Medicine
?Remember that each person’s symptoms are different. Treatment depends on symptoms. Your doctor may give you aspirin or a similar medicine to treat joint swelling and fever. Your doctor may prescribe a cream to treat the rash. For more serious problems, stronger drugs such as antimalarials, corticosteroids, chemotherapy drugs, and biologic drugs, including specific BLyS inhibitors, are used. Your doctor will choose treatment based on your symptoms and needs.
Always let your doctor know if you have a problem with your medicine. Tell your doctor if you take herbal or vitamin supplements. Your medicine may not work well with these supplements. You and your doctor can work with together to find the best way to treat all of your symptoms.
How Can I Deal With Lupus
?You need to find out what works best for you. You may find that your rheumatologist has the best treatment plan for you. Other health care professionals who can help you cope with other aspects of lupus include psychologists, occupational therapists, dermatologists, and dietitians. nursing. You may find that working out with a physical therapist makes you feel better. It is important that you talk to your health care team regularly, even if your lupus is not showing symptoms and everything seems to be fine.
Coping with a long-term illness like lupus can be emotionally difficult. You may think your friends, family and co-workers don’t understand how you feel. Common reactions are sadness and anger. People with lupus have limited energy and must manage it wisely. Ask your health care team about ways to deal with fatigue. Most people feel better if they manage rest and work in conjunction with medication. If you feel depressed, medication and counseling can help.
Pay attention to your body. Work slowly or rest before you get too tired. Learn how to control your own pace. Gradually your work and other activities. Don’t blame yourself for the fatigue. It is part of the disease. Consider using support groups and counseling services. They can help you realize that you are not alone. Team members teach each other how to cope. Consider other support from your family as well as other religious and community groups.
It’s true that when you have lupus, it’s harder to stay healthy. You need to pay close attention to your body, mind and spirit. Having a chronic illness is stressful. Everyone deals with stress in different ways. Some methods that can help are:
Stay socially engaged. Practice techniques like meditation and yoga. Setting priorities takes time and energy.
Exercise is another method that can help you cope with lupus. Types of exercises you can do include the following:
Joint motion exercises (eg, stretching) help maintain normal joint motion and reduce stiffness. This type of exercise helps maintain or increase flexibility. Strength training exercises (eg, lifting weights) help maintain or increase muscle strength. Strong muscles help support and protect joints affected by lupus. Aerobic or endurance exercise (for example, brisk walking or jogging) improves cardiovascular health, helps with weight control, and improves overall function.
People with chronic conditions such as lupus should consult their healthcare professional before beginning an exercise program.
Learning about lupus can also help. People who were well informed and involved in their care planning reported less pain. They may also see fewer doctors, feel more confident, and stay more active.
Women who want to get married should talk to their health care team carefully; for example: doctors, physical therapists, and nurses. Your obstetrician and lupus specialist need to work together to find the best treatment plan for you.
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Hope Through Research
Scientists are working to find out what causes lupus and how best to treat it. Here are some of the questions they are trying to answer:
Who can get lupus and why? Why are women more likely to get lupus than men? Why are there more cases of lupus in certain racial and ethnic groups? What’s not Is it ok in the immune system and why? How can we fix a not working immune system? What role do genes play in lupus? How can lupus symptoms best be treated any?
The National Institutes of Health (NIH) supports research into health and disease. The National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS) supports the study of bones, connective tissue, joints, muscles, and skin. These are the parts of the body that can be affected by lupus. Research supported by NIAMS is investigating the following issues:
Scientists have demonstrated that people with lupus who test positive for certain antibodies are more likely to have a more severe flare-up of the disease, and taking prednisone can prevent flare-ups of the disease in many individuals. .Researchers have found that the process of releasing dead cells from the body may not work as well with lupus. Discovering more about this process can help find the new treatments. Scientists are beginning to understand what role different types of immune cells play in lupus. This knowledge could help them find new ways to treat the disease. Proteins that have been identified in the urine of patients with lupus can indicate the type and severity of kidney disease they have. A simple blood test based on this finding could help patients avoid a painful and expensive kidney biopsy. Certain genes make certain people more likely to have serious complications. , such as kidney disease. NIAMS researchers have discovered a gene that is associated with a higher risk of lupus kidney diseases in African-Americans. Changes in these genes make it impossible for the immune system to clear harmful pathogens out of the body after they’ve done their job. Other genes have been identified as playing a role in lupus. Lupus is more common in women than in men. Researchers are studying the roles of hormones and other differences between men and women.
Further information about the study is available from the following resources:
Where Can People Find More Information About Lupus
?National Institute of Arthritis, Musculoskeletal, and Skin Diseases National Institutes of Health Information and Referral Center
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information ClearinghouseNational Institutes of Health