Lupus, also known as Systemic Lupus Erythematosus is a chronic autoimmune disease that causes the body’s immune system to mistakenly attack healthy cells and tissues. Unlike AIDS which occurs due to an underactive immune system, Lupus is caused by an overactive immune system. It can affect any part of the body but generally manifests in the form of swelling and inflammation of the skin and internal organs, particularly the kidney, lungs and thyroid. Researchers estimate over 1 million cases of Lupus are diagnosed in India every year. Lupus’ classification as “chronic” refers to the fact that symptoms of the disease may persist for several years and likely throughout the patient’s lifetime. As there is no single identified cure for the disease at this time, treatment is generally focused on controlling symptoms and improving the patient’s overall quality of life. It is important to remember that with modern advancements in medicine and healthcare, 80-90% of people with Lupus, undergoing treatment, are expected to live a normal lifespan. While hearing a Lupus diagnosis can be scary, learning as much as possible about the condition and what it means places you in the best possible position to tackle the illness.
1. What is Lupus?
Lupus is an autoimmune disease (auto means self“). The immune system is supposed to protect our body from external threats (mainly infections by bacteria, viruses). In autoimmune diseases, the immune system becomes hyper active. Instead of protecting the body, it starts attacking ones own healthy tissues causing inflammation and symptoms. The symptoms depend on the organ system involved.
Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
2. Where did the term Lupus come from?
Lupus is the Latin word for “wolf”. The term has been associated with the disease since the 10th century, though the reasons are unclear. Erythematosus means redness. It is speculated that the name was given to describe the skin lesions (sores), which typically are red and perhaps at that time in history were thought to resemble the bite of a wolf. Today we know that not everyone with lupus has rashes or skin lesions, and those who do would not say their rashes look anything like a wolf bite.
3. Who gets Lupus ?
Lupus affects people of all nationalities, races, ethnicities, genders and ages. Lupus is mainly a women’s disease and affects women during their child bearing age (15 to 40 years). The ratio of women to men is 9 to1, or 90%. Lupus can also affect older women, children and rarely men. Before puberty, boys and girls have the same ratio; that is 1 to 1.
4. How common is Lupus ?
Lupus is not uncommon. It is believed that 5 million people throughout the world have a form of lupus.
5. Is Lupus Contagious ?
No. Lupus cannot be transmitted from one individual to another.
6. How does Lupus manifest?
It can manifest in numerous ways. It has earned a reputation of great mimic.
Common symptoms of lupus are:
- Unexplained fever
- Extreme fatigue
- Painful or swollen joints
- Red rash or color change on the face
- Chest pain upon deep breathing
- Unusual hair loss
- Pale or purple fingers or toes from cold or stress (Raynaud’s Phenomenon)
- Sensitivity to the sun
- Swelling (edema) in legs or around eyes, etc.
- Swollen glands
These symptoms can come or go, and can range from mild to severe. Most lupus patients have a combination of symptoms.
7. Symptom checklist for lupus?
Check the symptoms you have experienced in terms of your current AND past health status. If you had symptoms like these over time, especially if you have had several, talk to your doctor about lupus.
Skin
- A reaction to the sun or light that causes a skin rash to appear or to get worse.
- Redness or rash across your nose and cheeks or other unexplained rashes.
- Sudden, unexplained hair loss.
Muscles and Joints
- Achy, painful and or swollen joints for more than three months.
- Persistent, extremely fatigue and weakness for days or weeks at a time, even after plenty of sleep.
- Seizure or unexplained confusion that lasted for more than an hour.
- Unexplained fever higher than 100o F/38o C for more than a few days.
Heart or Lungs
- Chest pain while taking deep breaths.
Eyes, Nose, and Mouth
- Sores in your mouth or nose that lasted for more than five days, or sores on your skin that would not heal.
Blood and Circulatory System
- Told you have anemia, low white cell count, or low platelet count.
- Fingers and/or toes become red or blue, or feel numb or painful.
- Blood clotting problems or a miscarriage.
Kidneys
- Told you have protein in your urine.
- Swelling in your legs and ankles on both sides at the same time.
8. What causes Lupus?
The exact cause of Lupus is not known. It is likely to be due to many factors. Heredity, hormones, infections and environmental factors may play a role in causing Lupus.
9. How is Lupus diagnosed?
Lupus is a difficult disease to diagnose, because its symptoms can be vague. Unlike some other diseases, it cannot be diagnosed with a single lab test. The diagnosis is based mainly on symptoms and signs. It is supported by detection of certain auto antiobodies in the blood. Most patients with Lupus have anti nuclear antibodies (ANA). When it is present, testing is done for more specific antibodies like Anti Ds DNA antibodies and anti SM antibodies.
Routine blood and urine tests may be needed to look for different organ system involvement.
10. I am ANA positive, can I develop Lupus, or am I suffering from Lupus?
No, positive for ANA doesn’t equate to having lupus. Although almost all people with lupus have the antibody, a positive result doesn’t necessarily indicate lupus. Positive results are often seen with some other diseases and in a smaller percentage of people without lupus or other autoimmune disorders. ANA can be positive in 5-30% of normal healthy individuals. So a positive ANA by itself is not enough for a lupus diagnosis. Doctors must consider the result of this test along with other criteria.
11. Can I have children if I have lupus?
In olden days doctors advised women with lupus not to get pregnant due to the potential risks to mother and baby. Though pregnancy in lupus still has its risks, most women with can have successful pregnancies. In women with Lupus successful pregnancy and childbirth are possible. For successful pregnancy it is important that the pregnancy is planned after discussion with treating rheumatologist.
The first steps toward a healthy pregnancy and baby begin before pregnancy.Before considering pregnancy it is important to consider the following factors:
Ensure disease control
- Having active disease can cause problems during pregnancy and may even lead to pregnancy loss. Therefore it is preferrred ot have a controlled disease for at least 6 months before planning pregnancy.
Review of medications
- Some medications are safe and some are harmful for the baby. The treating rheumatologist may need stop or switch some these medcations prior to pregnancy. Some drugs need to be stopped months before one tries to become pregnant. Drugs that should not be taken during pregnancy include methotrexate, cyclophosphamide, mycophenolate mofetil, leflunomide, and warfarin.
- Hydroxychloroquine sulfate (HCQs) is safe in pregnancy and feeding. Continuing HCQs during pregnancy is important to ensure Lupus activity is controlled during pregnancy.
Select a centre with Obstetricians experienced in managing Lupus pregnancy
12. How long can I live with lupus?
Lupus is not a universally fatal disease. Today,most people with lupus can expect to live a normal life span if they are properly treated, follow their doctor’s advice, and lead a healthy lifestyle.
13. Is lupus a progressive disease?
Not necessarily. With proper treatment, lupus is usually very well manageable.
14. Is lupus hereditary or genetic?
Genes do seem to play a role. Lupus is a “multigenic” disease, which means a number of genetic changes are necessary for someone to develop lupus .Ten percent of lupus patients have a first-degree relative (sister, daughter, son, mother) or a second-degree relative (aunt, uncle, first cousin) with lupus. Even with a family member with lupus, however, the chances of developing lupus are less than 5 percent . Therefore, most lupus patients DO NOT have relatives with lupus. Even in identical twins, when one sibling has lupus and the other twin does not, it is believed there are environmental factors that play an important role.
Routine laboratory screening of family members is not currently recommended. If there are symptoms of joint pain or swelling, unexplained rashes, chest pain, or hair loss, then they should see let their doctor and be sure to mention that a family member has lupus or any other autoimmune disease.
15. My wife’s mother has lupus. Are there any specific health tests that my wife should have done? Is it possible to prevent lupus in my wife or in our children?
Currently, no screening or genetic tests are available. If symptoms develop, such as joint swelling and pain, unexplained rashes, chest pain, or hair loss, we encourage family members to see their regular doctor and to be sure to mention the family history of lupus or any other autoimmune disease. Several surveys have estimated the risk of a mother with lupus having a daughter develop lupus is 10 percent and 2 percent for her son. These numbers are thought to be somewhat lower when the father is the individual with lupus. There is no known way to prevent the development of lupus.
16. Can I have my children tested for lupus?
Testing is not currently recommended in individuals who do not have symptoms of possible lupus.
17. Can something in your diet cause lupus?
We do not believe so. There are only a few food items that we recommend you avoid in large quantities (in particular alfalfa sprouts), and a few others that we encourage you to include in your diet (in particular omega-3 fatty acids, found in fatty fish and in fish oil supplements). Diet, nutrition, and lupus are areas that still need scientific study. We do know that certain herbs and dietary supplements can create problems when combined with certain prescribed medications, so consult your physician before adding these to your diet.
18. Is there a cure for lupus?
At the present time there is not a cure for lupus, but there are effective treatments. However, many people with lupus can have a full and rewarding life with the help of doctors, a good support system, and lifestyle changes.
19. How is Lupus treated?
Lupus needs long term treatment. The treatment of lupus depends on severity of the disease and organ system involvement. The severity of lupus varies from mild to potentially life threatening forms. Over the past few years with better understanding of the disease, refinement of treatment protocols the outcome of lupus has changed considerably. Though is no cure for lupus, effective and safe treatment options are available. Current treatments give most patients excellent control of disease, relief of symptoms and allow them to function at, or near, normal levels.
20. What medications are used in treating Lupus ?
The medications depend on severity and organ system involvement.The medications used for treatment of lupus include:
- Analgesics (pain killers)
- Glucocorticoids (Steroids in common language)
- Mycophenolate mofetil
- Azathioprine
- Cyclophosphamide
- Cyclosporine
- Tacrolimus
- Rituximab
Steroids are very much necessary and sometimes life saving. Steroids in various doses may be needed to control the disease. Conscious efforts are taken by treating doctors to prescribe minimum possible dosage. In some individuals they may be required to be taken for long term. Precautions are taken by treating doctors to prevent the side effects of steroids.Your doctor may consider low dose steroids for prolonged periods. You should ask your doctor before stopping or decreasing the steroids.
Other drugs like Cyclophosphamide, MMF and cyclosporine etc. are life saving and sometimes needs prolonged maintenance therapy. When you are on these drugs regular monitoring of investigations along with rheumatology consultation is necessary.
Sometimes drugs to thin the blood (anticoagulants) are used if the Lupus patient has an abnormal tendency to clot inside the blood vessels. (antiphospholipid syndrome).
21. Hydroxychloroquine sulfate and SLE.
Hydroxychloroquine sulfate (HCQs) is mild drug and is very beneficial in patients with lupus. The beneficial effects of HCQs are below:
- Given early in the disease results lesser cumulative organ damage
- In lupus pregnancy, HCQs helps in better control of lupus activity and improves pregnancy outcome.
- Reduces risk of lupus flares
- Better control of blood sugars and improves insulin resistance
- Reduces risk of neonatal lupus
- Reduces risk thromboembolic events (Eg: Stroke)
- Improves survival
22. Medications and disease monitoring in Lupus patients.
As your doctor prescribe many medications. Monitoring of side effects are very important issue. Initially you may require to check complete blood count, liver functions, and kidney functions. Then regular checkup should be bone once in 3- 6 months as advised by your rheumatologist.
Once disease is under control still you may need to check the blood counts, urine tests as there may be chances of recurrence or new development of symptoms in lupus patients. Regularly consult the rheumatologist as advised.
23. Living with lupus – do’s and dont’s
The more you understand about how lupus can affect your body, the better you will be at understanding how you can make lifestyle changes to stay as healthy as possible. Successfully managing lupus starts with awareness:
- Awareness of your particular symptoms and how your illness affects you
- Awareness of what you can do to prevent flares, and what to do if you do experience a flare
- Awareness of any changes in symptoms or physical conditions that could suggest disease activity
- Awareness of the tension and stress that often accompany chronic illness
- Awareness of the best coping strategies and techniques to reduce that stress
24. Suggestions on how to cope with lupus?
- Become well educated about Lupus.
- Rest is most essential. Allow extra time for rest. Try to prepare for up-and-down nature of the disease. Plan alternate activities and alternate schedules.
- Take short period of rest in-between work. Short afternoon nap may be energising.
- Be open with family and friends about the unpredictable nature of Lupus so that they understand your problems.
- Listen to your pain as a warning signal and you can begin to control it.
25. Are there any restrictions on physical activity for people with lupus? Are there any exercises that have been particularly beneficial, or especially harmful?
Exercise is encouraged in people with lupus to enhance overall health, improve mood, lessen symptoms of fatigue, and promote restful night-time sleep.
Exercises / activities that do not strain the joints or muscles, but still increase heart rate and flexibility, such as brisk walking, swimming, bicycling, and low impact movement exercises like yoga, Pilates, and Tai Chi. Weight-bearing and resistance exercises are very important as well, especially to promote strong bones. Keep in mind that exercise should be in moderation and never to the point of exhaustion.
26. Is there any special lupus diet?
At this time, there is no specific “lupus diet,” and most people with lupus do not require special diets. It important to take a healthy, well balanced nutritionally sound diet that includes all of the necessary vitamins, minerals, fats, and protein, and carbohydrates that your body needs to function at its optimum level.
