Systemic Lupus Erythematosus (Lupus)
in Children and Adolescents

Introduction
What does SLE mean?
What is lupus?
What causes lupus?
The Immune System
What happens in lupus?
What tests are done in lupus?
What treatments should you consider?
What about nonmedical drugs and remedies?

Diet

What about the rest of the family?
What about the future?

What treatments should you consider?
Treatment is available for everyone with lupus and it usually works well. The treatment is aimed at preventing complications, as well as treating the symptoms an signs of the disease. For instance, it is known that sunlight can trigger off lupus. It is a good idea to avoid too much sun by using sunblock on the exposed skin and wearing hats and long sleeved shirts when it is sunny.

When lupus is first diagnosed it will usually be very active. At this stage it may require high doses of medications to control the disease and prevent organ damage. Later on, particularly when lupus is controlled, you might be fed up with constantly taking medication, avoiding the sun, visiting the doctor and having tests. It is important to let the doctor know how you feel, as it may be possible to negotiate on some tests and visits. 

One of the areas that is not usually negotiable is medications, but even so, it is always worth discussing them with the doctor. Make sure you understand the reasons and goals of your treatment. The medications are powerful and may cause other health problems (side effects). Unfortunately, you may feel as though you have no choice about this. The medications that you will have to take are very good at what they do, but the price you will pay for controlling your disease can be high. Sometimes it will seem like you were better off sick than taking medicine. This is because the side effects of the medicine are very obvious while the damage from the disease, particularly the slow process in your kidneys, heart or lungs, is silent, without outside symptoms. Insist on understanding the reasons for and the goals of your treatment.

The medications prescribed for you will be chosen for specific reasons. If your lupus causes only arthritis and rash, the medicines can be relatively mild, such as nonsteroidal anti-inflammatory drugs (NSAIDs, eg. Naprosyn, Advil or Tolectin). These drugs may cause side effects such as abdominal pain (you should take them after you have eaten), easy bruising and rarely, headaches and mood changes. 

You may have to take a disease modifying anti-inflamatory drug (DMARDs) such as Plaquenil (hydroxychloroquine) for your skin rash. As this drug can cause eye side effects, you will need regular check ups from the eye specialist.

One of the most effective drugs for controlling lupus is a steroid or glucocorticoid called Prednisone. This is not the kind of steroid that makes your muscles grow. If you have to take steroids tell your doctor how the medicine makes you feel. The higher the dose of Prednisone, the worse the side effects. The worse the disease, the higher the dose of steroid. 

Prednisone causes many side effects. After the first few weeks of taking it, you may notice extreme hunger which may be hard to control. If you cannot control it, you will quickly gain weight, and your skin will have to stretch to hold your bigger body (giving you stretch marks). You may also notice that your facial features will gradually change and that your acne has worsened. These are not permanent problems and will go away when the steroid dose is lowered. Your mood may change abruptly. You may feel jittery or shaky, and you could have a hard time falling asleep at night. Steroids cause all that. 

Steroids also cause silent problems. They make it hard for you to fight infections by suppressing your immune system when it needs to fight infections. Steroids may cause high blood pressure, and different medications may be needed to treat that. Steroids may upset your body's sugar balance giving you mild diabetes or may even delay your growth. 

So you might wonder whether it is wise - trading lupus for a lot of side effects. It is wise. Lupus can be very severe, and steroid treatment has made a tremendous improvement in the chances for a healthy future. Once you start taking steroids, they cannot be stopped suddenly because your body becomes used to them. Your doctor will use only as much medicine as is needed to control your disease guided by your symptoms and blood tests. Once your lupus is controlled the dose of steroids and other drugs will be lowered slowly.

Some patients may need additional, even more powerful medications, to treat lupus. This next level of medications, also DMARDs, is sometimes called cytotoxic drugs and includes Imuran and Cytoxan. Some can be taken by mouth; others are safer when given by injection. Again, there may be side effects. These include temporary damage to your immune system (you might get infections more easily) and other rare complications. Your doctor should discuss them fully with you before you start taking the medications.

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