Q1. What is Systemic Lupus Erythematosus ?
A1. Systemic Lupus Erythematosus is an autoimmune disease where your immune cells – so called the WBCs/Leucocyte start attacking your own body. They perceive the body as a threat and start acting against your own cells.
Q2. What are the early symptoms of Systemic Lupus Erythematosus?
A2. Early symptoms of lupus can mimic infection and often diagnosis get delayed due to rarity of disease or lack of experts. Symptoms include fever, joint pain, recurrent oral ulcer, which are painless and classically “Butterfly rash”. Rash commonly are photosensitive. Other symptoms include anemia, low platelet counts, swelling in legs and around eyes.
Q3. What is a photosensitive rash? How would I know this is lupus?
A3. Photosensitive rash mean on exposure to sunlight your skin gets “reddish” but this is normal for many of us. If rash persists for hours together even after exposure and there are some symptoms as listed above, consult Dr Avinash Jain.
Q4. Are all joint pain arise because of lupus?
A4. There are many causes of joint pain. All that pains is not autoimmune or lupus. Joint pain without swelling is called arthralgia and with swelling is called arthritis. Causes can be infection, trauma, inflammation and many other non-inflammatory conditions. Leave it to a rheumatologist/expert to decide. Avoid google else you may land up diagnosing yourself to have a cancer. Remember little knowledge is more dangerous. Discuss with a rheumatologist.
Q5. What causes Systemic Lupus Erythematosus?
A5. The exact cause of Systemic Lupus Erythematosus is unknown. However, it is thought to result from an autoimmune process in which one’s own immune system attacks one’s own cells like skin or joint or mucosa resulting in rash, join pain with or without swelling or oral ulcers etc.
Q4. Who gets Systemic Lupus Erythematosus?
A4 Systemic Lupus Erythematosus usually affects young women. It is 5 to 10 times more common in women than in men. It can start any age but more commonly seen in young female in their reproductive age group.
Q5. What are the common differential diagnoses?
A5. Common differential diagnoses depends on set of clinical features. For eg “butterfly or malar rash” which is a reddish color photosensitive rash can occur because of lupus, acne rosacea, dandruff resulting in dermatitis. Other differentials could include dermatomyositis, Sjogren syndrome or simply a photodermatitis. Let your rheumatologists help you with you queries and differentials.
Q6. Common terms used in the disease.
A6. Common terms used other than Systemic Lupus Erythematosus include lupus
Arthralgia – joint pain without swelling
Arthritis – joint pain without swelling
Myalgia – Means pain in muscle or feeling of weakness in muscle
Palatal ulcer – painless ulcer over palate (roof of the mouth)
Photosensitivity – erythema occurring on exposure to sun
Aortitis – inflammation of aorta; It is the “main artery” of the body
Q7. Is lupus serious? What does severity mean?
A7. Severe disease in Systemic Lupus Erythematosus is indicated by one or major organ involvement which could include kidney, muscle, brain, nerves or severe anemia
Q8. How can kidney involvement occur in a setting of lupus or what are the signs and symptoms that may suggest of renal involvement
A8. Yes, kidney involvement can occur in lupus. Patient may have swelling in legs, around eyes, or decrease in urine per day, rise in blood pressure, may notice blood in urine or have concomitant fall in hemoglobin. Urine reports may show presence of blood (red blood cells) or white blood cells or protein.
Q9 How is Systemic Lupus Erythematosus diagnosed?
A9. Diagnosis of Systemic Lupus Erythematosus is made based on history, examination and supportive lab investigations and imaging. Most Patients have positive ANA when done by appropriate method.
Q 10 What are the treatment options?
A10. The answer to this question is not straightforward and needs assessment by a rheumatologist. Some of the patient may not need any treatment (immunosuppression) at all if rheumatologist feels disease is not active. Others may need drugs like steroids, hydroxychloroquine, methotrexate, mycophenolate, azathioprine etc. There are number of other treatment options available depending on disease activity status.
Q 11 What to expect after starting the therapy?
A11. Treatment takes time to act. Some of the symptoms may improve at a faster rate than others. Reason of starting the treatment is first to halt the progression of the disease.
Q12 -. Drug side effects
A12. All drugs have side effects but that is always monitored, Remember control of disease and hence a healthy life is most crucial. Side effects can be easily monitored and your rheumatologist will explain you the same. You may need to undergo investigations initially every 2-4 weeks then every 12 weekly or as indicated by your rheumatologist.
Q13. Exercise/Role of physiotherapy
A13. Exercise and physiotherapy are important and core part of treatment. Take time out to exercise, medidate.
Q14. Diet
A14. No specific dietary restrictions or suggestions exist for the management of Systemic Lupus Erythematosus. If there is associated hypertension or diabetes you will be advised accordingly. Important is to have balanced diet and maintain ideal body weight. If you are allergic to particular food item, then avoid accordingly.
Q15. Pregnancy
A15. It is essential that your disease is well under control as this improves the changes of “normal” pregnancy. Risk of hypertension, pre-eclampsia, and intra-uterine growth retardation (IUGR) is high in patients of Systemic Lupus Erythematosus during pregnancy particularly if disease is not under control or you stop your medicines. However, likelihood of relapse of active disease is low. Consult your rheumatologist before planning pregnancy. There are many drugs that can be used and are safe during pregnancy.
Q16. Lactation
A16. Medicines being used for the treatment of Systemic Lupus Erythematosus may not be completely safe while breastfeeding. Consult your doctor before taking any medicines.
Q17. Role of other allied health sciences?
A17 There are other modes of treatment options available in our country like homeopathy, Ayurveda, UNANI, naturopathy. Discuss with your rheumatologist about same.
Q18. Will smoking affect my disease activity?
A18. The effects of smoking on disease activity is incompletely understood and may aggravate your disease or result in worsening of some organs. It is advisable to stop smoking for better health and to avoid bone loss.
Q19. What is the effect of alcohol on my disease?
A19. The effects of alcohol consumption on disease activity directly is not clear at the moment. Certain drugs may have increased side effects if taken concurrently with alcohol. Moreover alcohol can affect your heart and liver amongst the many other side effects which can result in disease worsening with poor cardiac or liver function.
Q20. Can Systemic Lupus Erythematosus be cured?
A20. At the present moment, a cure is not available. However, do not be disheartened. Care by an experienced rheumatologist ensures a near normal quality of life for most patients. Disease is TREATABLE just like hypertension or diabetes. It does give an opportunity to decrease medicines when disease is under control/remission.
Q21. What is the natural course of Systemic Lupus Erythematosus ?
A21. Systemic Lupus Erythematosus is usually a slowly progressing disease with a good prognosis. Once diagnosed, it can be effectively controlled and progression halted with medicines.
Q22. Role of stress?
A 22. There is no disease where stress does not play a role. A stress free life plays a vital role whether you are diseased or not diseased or whether your disease is controlled or not controlled.
Q23. Can I Work?
A23. Most patients would be able to carry out daily routine activities, particularly when their disease is under control. Those who have active disease or severe disease (for example, heart failure or stroke) may have functional limitations. Your rheumatologist will help you in determining the level of exertion that you may safely endure.
Q 24 Does the disease have an effect on energy and fatigue?
A24. You will lead a normal energetic life with disease under control and regular physiotherapy and yoga as advised. Active disease, pill burden, chronicity of disease may play on your mind and you may feel lack of energy or dull and fatigued. It is okay to feel so and don’t be burdened as this can be taken care of. Essential is adaptation. Discuss with your rheumatologist.
Q25. Should I share or not share about my disease?
A25. This is a personal choice and it is upto you to take a call. Essential is timely diagnosis, regular visit and adherence. You can then lead a normal life. This is not a contagious disease. So don’t feel any stigma and feel free to discuss if you want to.
Q26. Will my kid get this disease?
A26. Chances are very low that your kid will get lupus as multiple genes are implicated in the disease. Discuss with your rheumatologist.
Q27. What other lifestyle measures should I adopt/other complications ? (weight/BMI/atherosclerosis)]
A27. Disease and drugs can result into weight gain for some and increase in cholesterol. Hence it is essential to stay fit, keep disease under control, take medication(s) as advised, check your blood pressure, sugar and cholesterol and treat them if indicated.
Stay healthy with/without medications. Important message is to stay and feel healthy.
