As
little as fifty years ago, only half the people diagnosed with lupus
were alive four years later. Today, you can live with this chronic
disease for many years in relative comfort, thanks to medical progress
and numerous treatment options.
While these symptoms may seem disconnected, they all originate in your immune system which creates antibodies to fight off infection. When you have lupus, your immune system turns against you, for reasons unknown, creating antibodies that attack your vital organs. These antibodies react with your own tissues, forming protein clumps called immune complexes, which build up and cause inflammation, tissue damage and pain
where they lodge. The most common form of lupus, systemic lupus erythematosus (SLE), can affect nearly every organ or body system. While the course of SLE is unpredictable, you can count you on periodic flare-ups (called flares by specialists) followed by periods of remission, which might last for months. Another form, discoid lupus erythematosus (DLE), primarily disrupts the skin (see on shortly)
The cause of lupus is unknown but scientists think that genetics sets the stage for sensitivities you develop later. At that time, an unknown trigger--may be an infection, antibiotics, ultraviolet light or even hormones--unleashes you first lupus flare. You are more likely to get this disease if you are a woman between ages 15 and 45, and if you are Asian, Hispanic or Native American. On a brighter note, along with the rest of the 1 in 1000 Australians with lupus, your odds of living out a normal lifespan are very good.
LIKELY FIRST STEPS
The key to controlling lupus to work with your doctor (usually a rheumatologist) to develop a plan to control your symptoms. Your goals are to keep flares from occuring, promptly treat the ones that do and prevent complications to your vital organs. In many cases, it's possible to keep a steady course with healthy lifestyle choices. When your disease does flare, a number of medications are useful for quickly getting it under control and casing the milder symptoms. For serious complications, specialised therapies or even a kidney transplant may sometimes be required.
Treatment Options
If you're having a flare, you'll need an oral or intravenous corticosteroid such as prednisone (Panafcort). These drugs reduce inflammation and slow your overactive immune system, bringing on a remission. But because they have potentially serious side effects if taken at high doses over long periods, your doctor will work to find the lowest possible dose. Nonsteroidal anti-inflammatory drugs (NSAIDs)--aspirin, ibuprofen (Nurofen), naproxen (Naprogesic) and the prescription drug sulindac (Clinoril)--also reduce inflammation and fevers. If these medicines upset your stomach, take them with meals, milk, and antacid or a proton pump inhibitor such as pantoprazole (Somac). Or check out the newer COX-2 inhibitors--celecoxib (Celebrex) and rofecoxib (Vioxx)--
which block stomach-inflaming substances.
If angry skin rashes are a problem, topical cortisone can be used short term. Antimalarial drugs, such as hydroxychloroquine (Plaquenil), help relieve skin and joint symptoms and fever and are particularly effective for discold lupus. However, they can damage your retinas so have regular eye examinations.
Finally, immunosuppressant drugs, such as azathioprine (Imuran) and cyclophosphamide, are used to treat severe flares or if there are kidney problems or other complications. These drugs are reserverd for serious situations because the price for this firepower may be adverse reactions, including a reduced number of white blood cells and a susceptibility to infections.
Procedures
If your joints are chronically weak and painful, physiotherapy may help restore their range of motion and strength. If your blood tests show antiphospholipid antibody syndrome, in which antibodies react against a fat molecule found in cell membranes, a procedure called plasmapheresis (blood plasma exchange) can remove the harmful antibodies from your blood.
What is happening
Doctors
in medieval times named this disease lupus because its hallmark facial
wash reminded them of a wolf blue ('lupus' is Latin for wolf) Not
everyone with lupus develops this inflammation, however. Other symptoms
might include achy swollen joints, fever, headache, extreme fatigue and
skin rashes aggravated by sunlight on other parts of your body. Lupus
can also lead to more serious problems, such as anaemia, inflammation
of the lungs or heart and serious neurological problems. And about half
of those with system-wide (systemic) lupus such as this develop kidney
complications at some point.While these symptoms may seem disconnected, they all originate in your immune system which creates antibodies to fight off infection. When you have lupus, your immune system turns against you, for reasons unknown, creating antibodies that attack your vital organs. These antibodies react with your own tissues, forming protein clumps called immune complexes, which build up and cause inflammation, tissue damage and pain
where they lodge. The most common form of lupus, systemic lupus erythematosus (SLE), can affect nearly every organ or body system. While the course of SLE is unpredictable, you can count you on periodic flare-ups (called flares by specialists) followed by periods of remission, which might last for months. Another form, discoid lupus erythematosus (DLE), primarily disrupts the skin (see on shortly)
The cause of lupus is unknown but scientists think that genetics sets the stage for sensitivities you develop later. At that time, an unknown trigger--may be an infection, antibiotics, ultraviolet light or even hormones--unleashes you first lupus flare. You are more likely to get this disease if you are a woman between ages 15 and 45, and if you are Asian, Hispanic or Native American. On a brighter note, along with the rest of the 1 in 1000 Australians with lupus, your odds of living out a normal lifespan are very good.
LIKELY FIRST STEPS
- With your doctor, development of a treatment regimen for the disease.
- Lifestyle choices to keep the disease in remission as long as possible.
- Medications to relieve joint pain, fever, rashes as well as other symptoms.
- Steroids to control inflammation and flares.
- If needed, specialised procedures for complications.
QUESTIONS TO ASK
- How can I avoid setting off lupus flares?
- Is there any medicine I can take instead of steroids?
- What are the chances I will need dialysis or a kidney transplant in the future?
- Will I need to make big changes in my life because I have lupus?
Treatments
The key to controlling lupus to work with your doctor (usually a rheumatologist) to develop a plan to control your symptoms. Your goals are to keep flares from occuring, promptly treat the ones that do and prevent complications to your vital organs. In many cases, it's possible to keep a steady course with healthy lifestyle choices. When your disease does flare, a number of medications are useful for quickly getting it under control and casing the milder symptoms. For serious complications, specialised therapies or even a kidney transplant may sometimes be required.
LIFESTYLE CHANGES
---------------------------------------------------------------------------------------------------------------------------------------------
Watch for flares Early treatment minimises damage.
----------------------------------------------------------------------------------------------------------------------------------------------
Treat infections Lupus makes you more susceptible.
----------------------------------------------------------------------------------------------------------------------------------------------
Exercise Builds strength and endurance.
----------------------------------------------------------------------------------------------------------------------------------------------
Avoid sun & allergens Either can trigger a flare.
MEDICATIONS
------------------------------------------------------------------------------------------------------------------------------------------
Corticosteroids Oral or IV for flares; topical for rashes.
----------------------------------------------------------------------------------------------------------------------------------------- NSAIDS For pain and inflammation.
-------------------------------------------------------------------------------------------------------------------------------------------
Antimalarial drugs Good for discoid lupus and skin problems.
-------------------------------------------------------------------------------------------------------------------------------------------
Immunosuppressants For severe flares or complications
PROCEDURES
---------------------------------------------------------------------------------------------------------------------------------------------
Physiotherapy Strengthens weak, painful joints.
---------------------------------------------------------------------------------------------------------------------------------------------
Plasmapheresis Removes harmful antibodies from the blood.
TAKING CONTROL
Lupus symptoms can develop as a side effect of certain medications, but this occurs in fewer than 10% of people who take such drugs long term. Possible culprits include arrhythmia medications procainamide (Pronestyl) and quinine sulfate (Quinate); blood pressure drugs hydralazine (Apresoline, Alpha-press) and methyldopa (Aldomet, Hydopa); the tranquilliser chlor-promazine (Largactill); and the tuberculosis drug isoniazid (Isoniazid). This form of lupus usually does no damage to the kidneys or nervous system, and symptoms typically fade within weeks or months of stopping the drug that caused them.
Lifestyle changes
Good habits can help keep this disorder in check:
------------------------------------------------------------------------------------------------------------------------------------------
About 20 percent of people with lupus have discoid lupus erythematosus (DLE), also known as cutaneous lupus
because it's confined to the skin. Its most distinctive symptom (small red patches on the cheeks, nose, scalp, ears and elsewhere) usually responds well to topical steroids. If your rash is wide-spread, resistant or in a tough-to-treat location such as the mouth, you may need oral steroids or immunosuppressant drugs.
You can avoid making your DLE worse by treating sores promptly; they tend to spread and scar your skin if left alone. Avoid the sun, use sunscreen and stay away from tanning salons. DLE doesn't usually affect your internal organs and your chances of it evolving into SLE are less than one in ten.
PROMISING DEVELOPMENTS---------------------------------------------------------------------------------------------------------------------------------------------
Watch for flares Early treatment minimises damage.
----------------------------------------------------------------------------------------------------------------------------------------------
Treat infections Lupus makes you more susceptible.
----------------------------------------------------------------------------------------------------------------------------------------------
Exercise Builds strength and endurance.
----------------------------------------------------------------------------------------------------------------------------------------------
Avoid sun & allergens Either can trigger a flare.
MEDICATIONS
------------------------------------------------------------------------------------------------------------------------------------------
Corticosteroids Oral or IV for flares; topical for rashes.
----------------------------------------------------------------------------------------------------------------------------------------- NSAIDS For pain and inflammation.
-------------------------------------------------------------------------------------------------------------------------------------------
Antimalarial drugs Good for discoid lupus and skin problems.
-------------------------------------------------------------------------------------------------------------------------------------------
Immunosuppressants For severe flares or complications
PROCEDURES
---------------------------------------------------------------------------------------------------------------------------------------------
Physiotherapy Strengthens weak, painful joints.
---------------------------------------------------------------------------------------------------------------------------------------------
Plasmapheresis Removes harmful antibodies from the blood.
TAKING CONTROL
- Know your pain relievers. Although paracetamol (Panadol, Panamax) may help you with pain and is kind to your stomach, it doesn't reduce inflammation. You may need to test several different NSAID analgesics, such as aspirin, ibuprofen and the prescription drug sulindac (Cinoril), to find out which ones will work best for you.
- Get enlightened about light. Ultraviolet-emitting lights (such as those in tanning salons) may trigger flares. Standard fluorescent office lights won't, so try to use these where possible.
Lupus symptoms can develop as a side effect of certain medications, but this occurs in fewer than 10% of people who take such drugs long term. Possible culprits include arrhythmia medications procainamide (Pronestyl) and quinine sulfate (Quinate); blood pressure drugs hydralazine (Apresoline, Alpha-press) and methyldopa (Aldomet, Hydopa); the tranquilliser chlor-promazine (Largactill); and the tuberculosis drug isoniazid (Isoniazid). This form of lupus usually does no damage to the kidneys or nervous system, and symptoms typically fade within weeks or months of stopping the drug that caused them.
Lifestyle changes
Good habits can help keep this disorder in check:
- Be alert for the first signs of a flare. Episodes are likely to follow a pattern. If you recognise a symptom--fatigue, joint pain or feverishness--treat it promptly. This can minimise discomfort.
- Get plenty of rest. Sleep at least 10 hours a night and longer during a flare. When your body says it need to rest, listen!
- Treat infection ASAP. Lupus and the drugs that control it make you more prone to step throat, yeast infections and viruses. At the first sign of any infection, contact your doctor.
- Exercise within your limits. It may seem counterintuitive, but exercise can make you feel less tired by building up your physical strength and endurance. Walking is energising; other good choices are swimming, water aerobics and cycling.
- Keep stress to a minium. It worsens symptoms. Look into meditation, deep-breathing and other relaxation techniques.
- Stay out of the sun. Sunlight or ultraviolet (UV) light can bring on a flare. When you go outdoors, wear a sunscreen of SPF 15 or higher and cover up with a hat and long sleeves.
- Avoid allergens. Hair dye, make-up and drugs can pose a problem for many with lupus, causing it to flare.
- Consult your doctor about preganancy. Having lupus can present special risks, both to an unborn baby and to you. Get the facts about minimising these hazards Rbefore you try to conceive.
------------------------------------------------------------------------------------------------------------------------------------------
About 20 percent of people with lupus have discoid lupus erythematosus (DLE), also known as cutaneous lupus
because it's confined to the skin. Its most distinctive symptom (small red patches on the cheeks, nose, scalp, ears and elsewhere) usually responds well to topical steroids. If your rash is wide-spread, resistant or in a tough-to-treat location such as the mouth, you may need oral steroids or immunosuppressant drugs.
You can avoid making your DLE worse by treating sores promptly; they tend to spread and scar your skin if left alone. Avoid the sun, use sunscreen and stay away from tanning salons. DLE doesn't usually affect your internal organs and your chances of it evolving into SLE are less than one in ten.
- Leflunomide (Arava), an anti-inflammatory drug already used to treat rheumatoid arthritis (another auto-immune disease common in women) may have a new place in lupus treatment. In a study done at Cedars-Sinai Medical Center in Los Angeles, 10 of 14 participants taking leflunomide showed measurable improvement; several were able to reduce their prednisone dose without causing a flare.
- There is growing interest in the use of immunoblation and stem cell transplants in SLE, along with a variety of other autoimmune disorders. The use of autologous stem cell grafts is possible and there are anecdotal reports that it has been successful. However, the timing of the transplant has proven difficult to determine, because it is only an option when other treatments have failed, and yet it should be done before there has been any permanent damage.
If you're having a flare, you'll need an oral or intravenous corticosteroid such as prednisone (Panafcort). These drugs reduce inflammation and slow your overactive immune system, bringing on a remission. But because they have potentially serious side effects if taken at high doses over long periods, your doctor will work to find the lowest possible dose. Nonsteroidal anti-inflammatory drugs (NSAIDs)--aspirin, ibuprofen (Nurofen), naproxen (Naprogesic) and the prescription drug sulindac (Clinoril)--also reduce inflammation and fevers. If these medicines upset your stomach, take them with meals, milk, and antacid or a proton pump inhibitor such as pantoprazole (Somac). Or check out the newer COX-2 inhibitors--celecoxib (Celebrex) and rofecoxib (Vioxx)--
which block stomach-inflaming substances.
If angry skin rashes are a problem, topical cortisone can be used short term. Antimalarial drugs, such as hydroxychloroquine (Plaquenil), help relieve skin and joint symptoms and fever and are particularly effective for discold lupus. However, they can damage your retinas so have regular eye examinations.
Finally, immunosuppressant drugs, such as azathioprine (Imuran) and cyclophosphamide, are used to treat severe flares or if there are kidney problems or other complications. These drugs are reserverd for serious situations because the price for this firepower may be adverse reactions, including a reduced number of white blood cells and a susceptibility to infections.
Procedures
If your joints are chronically weak and painful, physiotherapy may help restore their range of motion and strength. If your blood tests show antiphospholipid antibody syndrome, in which antibodies react against a fat molecule found in cell membranes, a procedure called plasmapheresis (blood plasma exchange) can remove the harmful antibodies from your blood.
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