What is Lupus?
Lupus is a chronic autoimmune disease where your immune system attacks your healthy tissue and organs. Typically, your immune system is supposed to fight threats such as infections. However, in this case, your immune system attacks the healthy cells of your body. Therefore, leading to inflammation and pain throughout your body.
What’s It Like Living with Lupus?
Keep in mind that every individual’s experience with this autoimmune disease is different. Some people may have similar experiences or symptoms.However, if you have a different experience, that does not discredit your diagnosis. If you would like to read more about people’s personal experiences, we encourage you to visit this blog from lupus.org: https://www.lupus.org/blog/sharing-the-journey-explaining-lupus-to-others
Is Lupus Considered a Serious Disease?
Yes, lupus is considered a serious and chronic condition. Of course, this also depends on the severity and intensity of the condition. Some people can live completely normal lives of they follow their treatment regime. However, others may face more serious risks as a result of having this disease. Because lupus causes your immune system to attack different parts of your body, it can lead to complications or damage to your organs over time. Thus, we encourage you to meet with your doctor so that you can begin a treatment that best suits your needs.
Can You Have Lupus for Years and Not Know It?
Because lupus is a chronic illness, there is still so much research that needs to be done to learn more about this condition. A lupus diagnosis may take time because it can often get confused with rheumatoid arthritis, scleroderma, or other autoimmune diseases. Or various autoimmune diseases may overlap and make diagnosis difficult to pinpoint. Others may experience too few symptoms/abnormal blood tests but no symptoms. For others, symptoms may not be evident until some time has passed- or they have cycles where their illness changes from time to time (having almost no symptoms one day and facing a serious flare-up another time).
What Some Possible First Early Signs of Lupus?
Keep in mind that every individual may experience a different set of symptoms. Also, be aware that many of these early symptoms may result from other conditions. However, some common early signs may include:
- Unexplained fever
- Hair loss
- Butterfly shaped skin rash or non-itchy lesions
- Pulmonary problems
- Kidney problems (inflammations such as nephritis)
- Swollen joints/Joint pain
- Gastrointestinal problems (occasional heartburn, acid reflux, or other problems)
- Thyroid problems
- Dry mouth and eyes
What Causes Lupus?
Women are more likely to develop lupus than men. Women tend to experience more symptoms before their menstrual periods- or during pregnancy when their estrogen levels are high. The reason may be due to the fact that estrogen is known as an “immunoenhancing” hormone, which causes women to have a stronger immune system than men. Therefore, autoimmune diseases tend occur more in women than men. However, more studies need to be done to understand a possible link between estrogen and lupus.
Because of advances in research, scientists have identified more than 50 genes associated with lupus. While most of these genes may not be the direct cause of lupus, they have demonstrated to play some role. Mutations/defects in MHC class II and III genres are generally associated with lupus.
Lupus also tends to run in families. If you have a parent or sibling with lupus, you have a higher chance than someone who doesn’t have a family member with lupus. However, that’s not to say that you will definitely develop lupus if it runs in your family- or that people without a family history of lupus will never have it.
Studies show that certain ethnic groups also have higher chances of getting the disease. These include African Americans, Asians, Hispanics/Latinos, Native Americans, Native Hawaiians, and pacific islanders.
Several toxins (such as cigarette smoke, silica, and mercury) have been linked by researchers to lupus. Infectious diseases like Epstein-Barr Virus, herpes zoster virus, and cytomegalovirus may also be contributing factors. As discussed above, certain medications can also cause your immune system to overreact. Lots of exposure to UV rays can also aggravate lupus symptoms.
What Should a Person with Lupus Avoid?
There are some things you should try and avoid as much as possible if you have lupus. Of course, every individual is different- so that’s not to say that all of these things will affect you the same way as someone else who has lupus. However, these items have commonly been shown to trigger flare-ups. These include:
Sunlight tends to trigger rash flares in those with cutaneous lupus (more of which we will discuss below). Some people may be more sensitive to sunlight than others. However, everyone with lupus is equally advised by their doctor to be aware of the effects of sunlight. It is highly recommended to use a sunscreen of at least 70SPF to help protect you from UV-A and UV-B rays. Doctors recommend you also put on a hat when outdoors and try to wear long and loose clothing.
2) Bactrim and Septra (sulfamethoxazole and trimethoprim)
Bactrim and Septa are antibiotics prescribed for bacterial infections that contain sulfamethoxazole and trimethoprim. However, these antibiotics are also known to increase sun sensitivity and lower blood counts in people with lupus (which can lead to flare-ups). Let your doctor know about any concerns you may have and talk with them about other possible alternatives.
The three components found in garlic (allicin, ajoene, and thiosulfinates) are thought to upstart your immune style by enhancing your body’s white blood cell activity. However, if you have lupus, the enhancement of your immune system can lead to it becoming overactive. You can enjoy a small amount- but be mindful of the foods you buy or cook and avoid eating garlic in large amounts.
4) Alfalfa Sprouts
Alfalfa sprouts contain an amino acid known as L-canavanine. In stimulating the immune system, this amino acid can trigger inflammation flares in people with lupus.
Echinacea is a dietary supplement often used to boost the immune system to fight colds and other illnesses. However, this boost in your immune system can lead to flare-ups in autoimmune diseases. It is best to avoid these kinds of dietary supplements. Generally, it is best to speak with your doctor about any new medications or supplements.
While drinking alcohol in moderation is not an issue, you must limit your alcoholic beverage consumption to avoid any complications with your medication. Alcohol can interfere with certain medications (such as NSAID drugs such as ibuprofen or naproxen). Combining these two can lead to ulcers and internal bleeding of the stomach.
What Are the 11 Symptoms of Lupus?
We have already discussed above some possible early symptoms of lupus. However, you may have lupus if you have at least four of these common symptoms:
- Butterfly-shaped rash
- Raised red patches on the skin
- Sensitivity to light
- Ulcers in your mouth or nose
- Arthritis in at least two or more joints- on top of swelling and tenderness
- Inflammation in the lining of your heart or lungs
- Seizures or other nerve problems
- Issues with having too much protein in your urine
- Low blood cell counts
- Specific antibodies present in your blood
- Results of your blood test (ANA test) show results of having too many “antinuclear” antibodies
What Are Lupus Flares?
Lupus flares are when your symptoms suddenly get worse, and you feel ill as a result. They can often come and go. One week you may be expecting intense symptoms- and then the following week, you may have no symptoms. The range in intensity a flare may occur depends on each individual.
What Can Trigger Lupus Flares?
It is important to note that each individual with lupus has different triggers. We recommend meeting with your doctor to discuss these triggers and to come up with a care plan that is best suited for you. However, some common triggers may include:
- Stress (both emotional and physical)
- Feeling overworked without getting proper rest
- Long exposure to the sun, fluorescent, or halogen light
- Colds or viral illnesses
- Stopping your lupus medication
- Taking certain medications that contain specific components
How Can I Tell if a Lupus Flare is Coming?
Some people may experience warning signs before a flare occurs. In learning how to spot these warning signs, you could prevent flares or make them less severe by seeking treatment quickly. However, there is no definite way of knowing if your flare-up is going to be mild or serious. Before a flare, you may experience:
- feeling more tired
- Unexplained fever
- Painful, swollen joints
- Swelling in the legs
- Stomach ache
- Sores or ulcers in the mouth or nose
- Severe headache
What Are the 4 Types of Lupus?
1) Systemic lupus erythemaauosus (SLE)
Systemic lupus is the most common form of lupus, and it makes up about 70% of all lupus cases. SLE can cause acute or chronic inflammation in multiple organ or organ systems in the body.
2) Cutaneous lupus
Cutaneous lupus affects the skin by causing rashes or sores around the face, neck, or scalp. These rash areas may be scaly and red and may not even itch. Others may experience a rash over their cheeks and nose bridge (also known as a butterfly rash). Usually rashes or sores appears in areas that are sun-exposed. The three kinds of cutaneous lupus are discoid cutaneous lupus, subacute cutaneous lupus, acute cutaneous lupus. Each type usually causes people to experience similar symptoms- such as a red, scaly rash that results from exposure to the sun. About 2/3 of people with lupus are affected by this type.
3) Drug-induced lupus
Drug-induced lupus often results from specific prescription drugs. Like SLE, it affects the joints and causes inflammation around the lungs. However, it is temporary, and symptoms usually subside within 6 months after stopping the medication. Some medications associated with drug-induced lupus are hydrazine, procainimide, isoniazid, minocycline, and anti-TNF.
4) Neonatal lupus
Neonatal lupus is a rare condition that affects infants and women who have lupus, especially those with specific antibodies such as anti-Ro, anti-La, and anti-RNP. At birth, infants may have a skin rash, liver problems, or a low cell count. However, these symptoms usually disappear after 6 months. However, in serious cases congenital heart block can occur. It is rare (it only affects 1-2% of infants), but infants born to women with lupus have a higher risk of developing this life-threatening symptom. That is not to say that women without lupus cannot give birth to a baby with neonatal lupus. However, with the development in treatments today, infants with congenial heart block can live healthy and normal lives by getting a pacemaker.
What Does Discoid Cutaneous Lupus Look Like?
People with discoid lupus get skin lesions that are disk-shaped, thick, scaly, and red. Usually, these appear on the face, ears, or scalp (but they can also occur in other parts of the body). One may also experience pain, itching, and burning around those areas, but this is not always the case. The lesions may also cause scarring and discoloration. If on the scalp, hair fallout may also occur. Be aware that having discoid lesions on your skin for years has a high chance of leading to skin cancer. We highly recommend you bring it up with your doctor so that they can monitor these lesions. As of right now, there is no cure for discoid lupus- but treatment can help.
What Does Subacute Cutaneous Lupus Look Like?
Subacute cutaneous lupus causes red, scaly, ring-shaped, or raised lesions on your neck, arms, shoulders, back, or chest. These lesions/rashes appear as a ring with a darker red circle on the outer edge of the ring. One usually does not experience itchiness or scarring, but they may become discolored. These lesions are also photosensitive, so doctors advise taking extra precautions if you are out in the sun (or under fluorescent lights).
What Does Acute Cutaneous Lupus?
Acute cutaneous lupus often causes a red rash to appear along the cheeks and bridge of the nose (usually as a result of sun exposure). However, it can also appear in other body parts- such as the arm and legs. This kind of rash is often referred to as malar rash or “butterfly rash.” It often looks like a sunburn, and scaring does not usually occur. A butterfly rash is often a sign that someone has active systemic lupus.
Is Lupus Genetic?
As we have discussed above, genes may raise your chances of having lupus. However, more research needs to be done to understand the link between genetics and lupus. So far, scientists have identified more than 50 genes (many of them being MHC genes) that are believed to influence a person’s chance of developing systemic lupus.
Lupus has also seems to run in families. However, research has shown that people tend to inherit a genetic predisposition where a mutation or a set of mutations increases an individuals chance of developing systemic lupus. However, studies with twins have shown that genetic mutations aren’t the sole factors or root cause. Research shows that when one identical twin has lupus, the other is 60% less likely to have it. Therefore, hormones and environmental factors must also be taken into consideration.
Does Lupus Cause Weight Gain?
Lupus may not always directly affect your weight. Instead, these changes may result from symptoms or the medicines you use to treat this condition. For example, some individuals may experience weight loss due to loss of appetite, nausea, or vomiting. These may be symptoms of lupus or a side effect of the medications. On top of that, lupus may affect how your body absorbs nutrients. Meanwhile, others may experience weight gain due to reduced activity levels or a side effect of steroid use.
Does Lupus Affect Your Eyes?
Lupus is known to cause changes to the eyes, eyelids, tear glands, tear ducts, nerves, and blood vessels. These changes can often lead to eye pain, dry eyes, changes in vision, or even vision loss. Other ways lupus can affect your eye include:
- Dry eyes (Dry Eye Syndrome)
Lupus can cause damage to the tear glands, tear ducts, and mucosal tissues that are in charge of lubricating the eye. Therefore, people with dry eyes often feel like they have sand in their eyes. They may also feel eye pain, irritation, itching, burning, and light sensitivity. If not treated, the lack of lubrication to the eye can cause damage to the cornea and membrane that lines the eyelid (conjunctiva).
- Discoid Lupus Erythematosus
Discoid Lupus Erythematosus appears as a thick rash over the eye and may cause some individuals to lose their eyelashes. Discoid Lupus Erythematosus is treatable with oral steroids. However, your doctor may require you to get cortisone injections if the case is severe.
Lupus can cause your sclera (the white part of your eye) to become inflamed, which causes yellow discoloration. People may feel pain, light sensitivity, blurred vision, eye redness, or dark patches on the sclera. Over time, scleritis can lead to the thinning of the sclera or even serious eye damage and loss of vision. Scleritis is also a common symptom of rheumatoid arthritis, so we highly recommend you meet with your doctor to receive a correct diagnosis.
- Retinal Vasculitis
Lupus may cause a reduction in the blood supply to the retina, which results in the inflammation of the blood vessels. As a result, the retina (the layer of cells in the back of your eye that senses light) tries to create new blood vessels. However, these new blood vessels are often weak and can break or lead to a leakage. This can result in swelling, blind spots, and a decrease in vision.
- Optic Neuritis or Neuropathy
Optic Neuritis is less common in people with lupus. However, this condition causes inflammation of the membrane around the optic nerve and can lead to tissue death. Meanwhile, optic neuropathy causes blockages of the blood vessels leading to the optic nerve. Damage to the visual nerve fibers in the brain may lead to hallucination and loss of peripheral and/or central vision.
- Side effects from lupus medication
Certain immunosuppressive drugs, antimalarials, and steroids (used to treat lupus) can affect the eye. For example, immunosuppressive mediation may increase the risk of developing eye infections. Meanwhile, antimalarial medications can lead to retinal problems or damage. Steroids can increase your chance of later developing glaucoma and cataracts.
Overall, if you have any questions or concerns, we highly recommend you speak with your doctor. It is also recommended that you attend your annual eye exam to ensure that everything is alright with your vision.
Is Lupus Contagious?
Lupus is not contagious. You cannot catch or give lupus to someone. Lupus usually results from a combination of genetic, hormonal, and environmental factors.
Do I Have to Change my Diet if I Have Lupus?
Depending on your symptoms, triggers, or treatment plan, you may have to make some changes with what foods you can eat. It is best to ask your healthcare provider if there are any specifc foods your need to eat or limit. Typically:
- Taking steroids or other medications may cause weight gain. Therefore, you may want to ask your doctor about making specific changes to your diet and daily activity level.
- Meanwhile, others may experience weight loss due to loss of appetite. Your doctor may work with you on what measurements you can take to avoid becoming too underweight.
- Doctors recommend that people with lupus try to avoid sunlight. Because of this, your doctor may advise you to eat foods rich in vitamin D (or take dietary supplements).
- If you have hyperlipidemia (high level of fat in your blood) as a result of having lupus, your doctor may recommend you follow a low-fat diet plan.
- A diet high in omega-3 fatty acids may help with inflammation. You may want to incorporate foods like fish, nuts, and flax. However, you would want to avoid foods high in saturated fats because they can increase the risk of cardiovascular disease and/or stimulate the immune system.
- If you have osteoporosis or osteopenia, you doctor may recommend you take calcium and vitamin d supplements and eat a calcium rich diet. You may want to incorporate into your diet milk, frozen yogurt, cottage cheese, pudding, almonds, yogurt, cheese, dark green, leafy vegetables, soybeans, etc.
What is the Life Expectancy of Someone with Lupus?
The good news is that with today’s development in research and treatments, about 80-90% of people with lupus can expect to live a normal life span. While there is no cure, lupus is no longer fatal as it once was. People who follow their doctor instructions, take their medication, and seek help for medication side effects or new lupus symptoms can expect to live a normal lifespan. However, it is important to keep in mind that the intensity of disease varies between individuals. People with severe flare-ups can have a higher chance where their lupus can be life-threatening.
What is the Difference between Lupus or Rheumatoid Arthritis (RA)?
Lupus and RA are both autoimmune diseases that often get mistaken for one another because they share many symptoms. A few of these common symptoms include joint pain, joint swelling, hot and tender joints, fatigue or weakness, or unexplained fever.
However, lupus is an autoimmune disease where your immune system attacks your body’s cells, which triggers inflammation and can lead to damage to healthy tissue. Thus, unlike people with RA, people with lupus also experience more issues involving their internal organs and skin. Lupus can also result in life-threatening complications such as kidney failure, blood clotting issues, or seizures.
Meanwhile, RA mainly affects the joints such as your fingers, wrists, knees, and ankles. RA can also lead to deformation and stiffness of joints (which usually does not occur in lupus). RA pain also tends to be worse in the morning, and it gets better as the day progresses. With lupus, joint pain may be constant throughout the day, and it can migrate. RA may also affect internal organs by causing inflammation to the ear and lungs, but it does not usually affect the kidneys (while lupus does).
What Happens if Lupus is Left Untreated?
Lupus is a highly complex disease that affects every individual differently, making it difficult to predict what could happen if your lupus is left untreated. However, to increase the chances of you being able to live a normal lifespan, it is best if you seek advice/treatment from your healthcare provider. While lupus is not as fatal as it once was, it can still seriously affect and/or damage your organs. Regular monitoring is critical due to the high risks of expecting flares that involve more severe organs (such as the kidneys, lungs, or heart). Overall, we highly encourage you to meet with your healthcare provider to develop the best treatment plan for you. If you would like keep you information organized for your doctor visits, you can also keep track of your symptoms or triggers by using the Febo app today!