Lupus Disease -Symptoms and Treatments
Lupus Butterfly Rash
Lupus means "wolf". Erythematosus means "redness". In 1851, doctors thought the facial rash that frequently accompanies lupus looked like the bite of a wolf, thus the name. I've had the "butterfly rash" as I prefer to think of it, which is one of the more classic signs of lupus. The wolf name just doesn't sit well with me! One of the sad aspects of lupus is that it takes five years for most people to get diagnosed,yet over 50 million people have an autoimmune disease.
I like to be well informed and have found "The Lupus Book: A Guide for Patients and Their Families" by Dr. Daniel J. Wallace to be very helpful. There are many other helpful books available. There are more well-known people finally admitting to suffering from this disease, including Toni Braxton. She has had to give up a lucrative singer career in order to save her life.
Systemic Lupus Erythematosus is one of the autoimmune diseases that involve your immune system turning against your body. It is a multi-system disease. Lupus varies greatly in severity in individuals from mild cases with minimal intervention to those with significant symptoms and potentially fatal damage occurs to vital organs, such as the lungs, heart, kidney and brain. The disease is also characterized by flares of activity interspersed with periods of improvement or remission. It is a difficult disease to diagnose as many of the symptoms are also found in other diseases.
Common Symptoms Include:
- Malar "butterfly rash over the cheeks of the face (only affects about 15%)
- anemia ( may be low red or white blood cells or low platelets)
- low grade fever -over 100 degrees
- chronic fatigue
- arthritis - two or more tender, swollen joints of the extremities
- kidney damage - spilling protein, red blood cells or white blood cell casts into your urine
- pleurisy - an inflammation in the lining of your lungs which causes pain
- pericarditis - an inflammation in the lining of your heart, also very uncomfortable
- alopecia -hair loss
- Raynaud's phenomenon - an autoimmune disease affecting the circulation of blood in your fingers causing numb, purple fingers
- Brain irritation -causing seizures
- Mucous membrane disorders -ulcerations of the mouth or nose
- Antinuclear antibody -positive ANA blood test
Lupus Books with Good Information
The more symptoms a person has from the above list, the greater likelihood they have lupus, usually 4-7 confirm a diagnosis. There is no one specific test for lupus. The ANA blood test is usually positive about 97% of the time if you have lupus. A Very Good Rheumatologist is a must. They are specifically trained in autoimmune diseases. They will do a complete physical, a battery of blood and a urine test to help confirm the disease. You need a good working relationship with your rheumatologist, so that you are comfortable talking with them about any problems you are experiencing. Then, you will get on the right medical regimen for you.
Depression is often a problem found in lupus patients, especially when their symptoms develop slowly for years and they have no explanation or if their disease is advanced. If you are in an active disease time, more sleep us required, but it seems poor sleep quality is also a problem when you have lupus and adds to the fatigue problem. It is a "bone weary" tired that nightly sleep does not remedy. I find an afternoon nap helps me tremendously. Obviously this is not an option is you are working and you may need to find a way to have extra down time on the weekends, times outs when possible, take your lunch to work and put your feet up are just a few suggestions.
The America with Disabilities Act does insure you can request proper lighting at work, as fluorescent lighting is not healthy, a wrist support if you do a lot of computer work is helpful or perhaps a chair that is more comfortable to you. I would certainly suggest you check into what your company might be willing to do to accommodate your disability. Another helpful consideration is carefully prescribed exercise which will help maintain your joints and muscle tone, plus range of motion in your joints.
Lupus Affected Areas of the Body
Medical Treatment of Lupus
The most exciting new medical treatment for lupus is Benlysta, which was developed by Glaxo/Smith/Kline, and is the first medication that actually treat the disease of lupus versus the symptoms. This medication is used when other medications fail and if very effective for patients with Lupus Nephritis. Nausea, diarrhea and fever are the most common side effects, but the medication promises to be more effective in Lupus treatment with fewer side effects than the other medications.
Other commonly used drugs include acetaminophen and and NSAIDs, such as Naprosyn, Anaprox, Daypor, Lodine, Indocin, Ralenfen and Voltaren. These are the more minor drugs that relieve acts and pains, including some joint pain and headaches.
Prednisone is a corticosteroid that suppresses the immune system and is frequently used to treat lupus patients, hopefully for the short term as the long term side effects include cataracts, weight gain, osteoporosis, fluid retention, easy bruising, an increased risk of infections, elevated blood pressure, muscle weakness and gastritis. In higher doses the side effects are more severe.
Other immune suppressant drugs for more serious lupus problems include: methotrexate, Cytoxan, Imuran, Azasen, Cellcept and Avara. An increased risk of infection is a major risk. Other possible side effects include liver damage, decreased fertility, and increased risk of cancer.
Another problem the Lupus Organization explains is the term "lupus fog". It is almost universally known to people with lupus. The phrase reflects the difficulty that you may have in completing once-familiar tasks, such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts. Properly termed "cognitive dysfunction" or "cognitive impairment," this inability to recall information can be extremely frustrating. These symptoms may come and go, but may also be continuous, making school or work difficult or even impossible in extreme cases. People with both lupus and Fibromyalgia are even more likely to experience cognitive problems".
Help Yourself by Learning about Lupus
In conclusion, lupus is a complicated disease, which is why a good rheumatologist is so important. It is also important to develop a strong support group within your family and friends. It is very difficult to get affordable life insurance once you have this diagnosis, despite the fact that most people live many years with proper treatment.
Learn to live within your ability for activity, which means sometimes skipping that shopping trip, or cleaning the house perfectly. The most important thing is to find some stress relief and if you don’t take care of yourself, you sure can’t help anyone else.
© 2009 Pamela Oglesby
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