The Norfolk Lupus Group is a regional support group for people who are living with and learning to live with Lupus, and is part of LUPUS UK

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What are the physical Effects
taking_notes.jpg What are the physical Effects

Joints - Arthritis (pain, swelling, redness, morning stiffness, warmth). It may be very painful, often involves small joints of the hands and wrists (although other joints are also involved). It can be migratory - moving from one joint to another, or intermittent - coming and going. However, it virtually never produces the bony and sever deformity associated with rheumatoid arthritis.
Blood vessels -The most common blood vessel involvement is Raynaud's Phenomenon, a condition where small blood vessels in finger tips, toes etc, are hyperactive to cold and/or emotion causing digits to become blue, then white, then red as they recover. More severe, and less common is inflamation of the larger blood vessels, causing rashes on lower legs and hands. If the vessels of the internal organs become inflaed, this can result in damage to the organd themselves.
Serosal membranes - Membranes surroundingthe lungs, heart or lining the abdominal cavity can become inflamed producing pain and/or the collection of fluid. Clinically this is Pricarditis, Pleuritis or Peritonitis, depending on location.
Blood cells - RBS anaemia is quite common and most often due to poor production of red cells. A special type of anaemia is that caused by antibodies which react with red blood cells to cause their destruction. This can cause fatigue. Platelets can also be destroyed by an immunological mechanism causing a bleeding and/or bruising tendency.
Nervous system - Peripheral nerves - numbness, tingling, weakness due to damage of a peripheral nerve - Often resolves.
Central nervous system - Headaches are frequent, so is depression. More involvements include seizures, marked mental changes, psychosis, and strokes.
Kidneys - Kidney involvement can range from very mild to a severe and progressive type which can destroy the kidneys and lead to dialysis. Symptoms patients may notice include diffuse fluid retention and puffiness, but for the most part early detection of kidney involvement requires frequent monitoring of blood and urine tests. Lupus renal disease, if it is going to develop, usually appears in the first year or two of th edisease. It rarely develops later, and almost never occurs in drug induced Lupus.
Pregnancy - There may be an increased risk of miscarriage in the Lupus patient, sometimes recurrent, with the miscarriage frequently occuring in the third or fourth month of pregnancy. Some miscarriages may relate to problems arising through the lupus anticoagulant and anticardiolipin antibody, whereas the possibility of having a stillborn child is more likely for those Lupus patients with kidney problems which can lead to toxaemia. Certain Lupus patients have antiphospholipid intibodies where the blood is 'stickier', this can lead to clotting in the placenta and thus to miscarriage. A number of successful lupus pregnancies are now being achieved through careful monitoring and the use of anticoagulating medication.


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  • What is Lupus  ( 0 items )
    What is Lupus

    Lupus is a currently incurable genetic disorder of the immune system, which although not widely known about, is actually more common than Leukemia, Muscular Dystrophy, and Multiple Sclerosis. Indeed those three conditions share a number of symptoms with Lupus which helps to make it a very difficult condition to diagnose.
    In simple terms, Lupus is a condition where your immune system goes into overdrive, and produces too many antibodies. An antibody's job is to find bacteria within your body and disable it, making it easier for your white blood cells to capture and destroy. However, when your body produces too many of these antibodies, they begin attacking healthy parts of your body causing inflammation and damage.
    Lupus affects more women than it does men. Approximately 90% of Lupus patients are women, with the other 10% being made up of men and children. There are three different types of Lupus.
    Systemic Lupus Erythematosus, often referred to as SLE is the most dramatic incarnation of the condition. As the word systemic implies, it can affect just about any part of your bodily system, most notably the joints, skin, kidneys, lungs, heart, and the brain. If left untreated, this can result in serious permanent damage.
    Discoid or Cutaneous Lupus mainly affects the skin, and manifests itself in a red rash or colour change, normally on the chest, face head or scalp. Interestingly, the red rashes are the source of the name Lupus. The Latin name for Wolf is Lupus, and it was once believed that the rashes resembled a wolfs bite. The butterfly motif that most Lupus organisations use is derived from the shape of the malar rash which occurs on many patients faces.
    Drug Induced Lupus is caused by some prescription medications, usually for blood pressure and heart conditions. It manifests itself in the same way as SLE, but usually clears up when the medication or treatment ends.

     

  • What are the Symptons  ( 0 items )
    What are the Symptons

    Lupus manifests itself in a long list of symptoms. Not every patient displays all of these symptoms, and not everyone will display the same symptoms, but it is common for patients to be able to identify with at least half a dozen of the symptoms listed here.

    • Joint and muscle aches and pains
    • Permanent rashes
    • Oral and nasal ulcers
    • Extreme fatigue and weakness
    • Flu like symptoms and night sweats
    • Weight gain or loss
    • Swelling of legs and ankles
    • Chest or abdominal pains
    • Seizures, mental illness and cerebral problems
    • Headaches and migraines
    • Kidney and liver problems
    • Rashes caused by or inflamed by sunlight
    • Hair loss and alopecia
    • Depression
    • Hematological conditions
    • Swollen glands
    • Poor blood circulation
    • Cold feet and hands

    The most commonly experienced symptoms are aches and pains in joints and muscles, and of course extreme fatigue, tiredness and weakness.

  • How is Lupus Diagnosed  ( 0 items )
    How is Lupus Diagnosed?

    Lupus, as we have already discussed, is quite remarkably difficult to diagnose, and as a result many people never get diagnosed and given the correct treatment. Lupus is normally diagnosed by a rheumatologist, however it's not uncommon for other specialists such as cardiologists, dermatologists, obstetricians and kidney specialists to be involved in the process.
    To diagnose this condition, specialists use an internationally recognised list of 11 conditions, and compare these to your medical history and current symptoms. They are looking for at least 4 matches, and the list of conditions are:-
    Malar rash. This is a permanent red facial rash, usually found on the cheeks or across the nose.
    Discoid rash. This is a red rash which is normally associated with scaling of the skin and blockages in hair follicles.
    Photosensitivity. A rash which is caused by or inflamed by exposure to sunlight or UV light.
    Mucosal ulcers. These are small sores and rashes that appear in the mouth and nose.
    Serositis. inflammation of the membranes covering internal organs, causing chest and abdominal pain.
    Arthritis. continuous and sometimes crippling pain in the joints and muscles.
    Renal disorders. This is normally detected through routine analysis of blood and urine samples.
    Neurological disorder. seizures or psychosis.
    Hematological disorder. hemolytic anaemia, leukopenia, thrombocytopenia.
    Immunologic disorder. detected through tests on LE cells, anti-DNA and anti-SM antibodies.
    Anti Nuclear Antibody. when found in the blood of a patient who is not taking drugs or medication.
    Lupus diagnosis often involves a lot of testing. Among other things, a doctor will request a Full Blood Count, Creatinine and electrolytes tests, Liver function tests, Erythrocyte Sedimentation Rate, checks for C-reactive protein, Urine tests, Blood clotting tests and Immunological tests.

  • How is Lupus Treated  ( 0 items )
    How is Lupus Treated?

    At the moment, there is no cure for Lupus. It can be treated, and with the correct medication the symptoms can be kept under control, allowing the patient to enjoy as near a normal lifestyle as possible. There are many medications that can be issued for the treatment of Lupus, the most common of which are:-
    Non steroidals. These are anti-inflamatory drugs which are used to reduce pain in muscles and joints.
    Anti Malarials. These are used to help in patients with skin and joint issues and are of help with fatigue too.
    Steroids. These have a serious effect on inflammation and active disease. They do however have a few possible side effects which can include weight gain, muscle weakness, and with prolonged use, the possibility of developing osteoporosis.
    Immunosuppressants. These are used in more extreme cases of Lupus, where kidney disease is involved, or where it is difficult to reduce the steroid usage.
    Non-lupus drugs. These range in type from simple skin creams to tablets.
    In addition to medications, patients may find they need to make some simple adjustments to their lifestyle, including avoiding prolonged exposure to strong sunlight (sunblock helps, but it's not a cure), exercising gently but regularly, resting when needed, and generally adopting a healthier outlook by eating better food and stopping smoking etc

  • How do I exlain about my Lupus?  ( 0 items )
    How do I exlain about my Lupus?

    Lupus is perhaps one of the most difficult conditions to describe and explain to people. How many times have people looked at you and said "But you don't look sick"?
    Christine Miserandino, an American who has spent years learning to live with Lupus has observed this, and has launched an extremely helpful website called ButYouDontLookSick.com. Within this website, back in 2004, she posted an article in which she explained to her friend who had no experience of Lupus, exactly how the condition affects her.
    It's beautiful in it's simplicity, and it really drives home on the uninformed listener exactly how difficult life can be with the condition. Christine calls it The Spoons Theory, and if you haven't already heard of it, you can read it by following the links to her site in this article, or by following the links on our friends page.