Lupus Trust

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Why We Chose To Support St Thomas Lupus Trust?Kelle_BRYAN

 We have chosen Lupus because one of our loyal customers suffers from this condition.  We would like to help, raise awareness and change lives, for others like Kelle Bryan.


What is Lupus?

Lupus is now recognised as an important illness of modern times. It is a disease in which the immune system goes ‘wrong’ and becomes overactive. It can affect any organ of the body. Because the symptoms can be so diverse, including for example; fatigue, rashes, allergies, depression and kidney failure, Also called the ‘great mimic’.

All ages could become affected, but the commonest sufferers are young females, especially those of African and Asian ancestry, the peak ages being between 18 and 45.

The outlook for most sufferers, given the correct treatment, has improved beyond recognition.

We have made a lupus information documentary called ‘Lupus? What’s that?’ – the same words that are on our lupus awareness wristbands.

It contains medical information but also has real lupus patients from all different backgrounds, ages, ethnic groups and sexes talking about having lupus. You get to see the people in their own homes with family/friends/pets, we have tried to show not just the medical facts but how people manage to live and cope with lupus and everything it throws at them. There are some very personal insights into the illness by patients and their families as lupus can also affect families too. As you may know, lupus is very different in the way it affects each patient so we have tried to cover cross sections of the severity of it.

How Is It Treated?

Treatment aims to suppress the overactive immune system and diminish inflammation. Treatment may be aggressive (e.g. steroids), but milder drugs also widely used (e.g. antimalarials). With time the aim is to reduce drugs and ultimately discontinue their use. Patients may experience fluctuating course of lupus, but most patients do get better and in the long term and aggressive treatment may not be needed.

Generally drugs used in the treatment of lupus fall into 4 groups:
  1. Aspirin and Non Steroidals – low dose aspirin (75mg per day) “junior aspirin” widely used in those patients with Antiphospholipid syndrome or “sticky blood”. Non-steroidal anti-inflammatory drugs, also useful for joint and muscle pains but should only use sparingly because of their side effects on the stomach.
  2. Anti-malarials – Hydroxychloroquine is a mainstay of treatment for mild to moderate lupus. It has an anti-inflammatory effect as well as providing some protection against sunlight and often used as the first line of treatment.
  3. Steroids – are vital and even life saving in acute flares but modern treatment aims at reducing or even stopping steroid treatment wherever possible.
  4. Immuno suppressives – in lupus the immune system is overactive hence the development of a number of drugs used to suppress the overactive immune response. These include Azathioprine, Methotrexate, Mycophenolate and Mofetil (MMF) as well as the stronger cyclo-phosphamide. The latter drugs reserved for patients with severe disease and is usually administered by injection.

How is lupus diagnosed and monitored?

During the past thirty years, more sensitive blood tests have allowed us to recognise that for every patient with severe lupus, there’s many more with subtle forms of the disease where the diagnosis’ delayed or missed.

Blood tests are used both for confirmation as well as for monitoring the progress of the illness. The ANA (antinuclear antibody) test, if positive, should be followed by other specific tests to pinpoint more accurately the extent and type of the disease.

Main tests in lupus:
  • Anti-nuclear antibodies (“screening test”)
  • Anti-DNA antibody (“specific” for lupus)
  • Anti-cardiolipin antibody (clotting tendency)
  • Lupus anticoagulant (clotting tendency)
  • (ESR) erythrocyte sedimentation rate
  • (CRP) C-reactive protein
  • Routine blood count & chemistry
  • Complement
  • Urine

Many patients, when first told they have lupus find information scarce and often full of gloom. Until recent years, lupus widely regarded by doctors as a rare disease – sometimes as dire disease, involving kidney damage and fatality rate. They may have advised their patients against pregnancy at all cost and issued other alarming warnings.

However, the real prognosis is good. Indeed in the majority of patients, the disease ends up under control and many patients are able to come off most of their medication when the disease goes into remission after a few years.

What is the cause?

The basic problem is in an alteration in the immune system. The normal immune system, which produces antibodies against foreign invaders, such as bacteria, goes into ‘overdrive’ and produces too many antibodies. This in turn can affect any organ in the body.

The cause, not yet known. There’s definite genetic tendency but despite years of research, no virus or infectious, unidentified. Neither is there strong evidence of an environmental cause.

The current figure for estimated sufferers is 1 in 750 Caucasian females and as high as 1 in 250 amongst Afro-Caribbean & Asian females. Although the cause, unknown, research suggests that hereditary factors play a role. Advances in genetics have dramatically improved the pace of research for discovering the genes that contribute to lupus susceptibility, severity and mortality. The identification of these genes will provide a framework for understanding the basis of this illness.

Drug induced Lupus

Drug induced lupus (DIL) is a side effect of long term use of certain medications. These drugs cause an autoimmune response (the body attacks its own cells) producing symptoms similar to those of SLE, but it is not generally as severe as SLE.

Symptoms that occur in both disorders include: muscle and joint pain and swelling; flu-like symptoms such as fatigue and fever; serositis (inflammation around the lungs or heart that causes pain or discomfort); skin rash, Raynaud’s phenomenon, and positive ANA test results.

Once the suspected medication has stopped, symptoms should decline within days. Usually symptoms disappear within one or two weeks, although there’s reported cases of DIL that do not go away completely after the offending drugs removed.

Besides stopping the offending drug, non-steroidal anti-inflammatory drugs (NSAIDs) can also help symptoms resolve faster. In patients with severe symptoms of DIL, corticosteroids may help reduce inflammation.

There is a list of over 100 drugs that can cause lupus, the symptoms will often appear after a person has been on high doses of the medication over a number of years.

Below are just some of the drugs and chemicals:

Proven Association:
Chlorpromazine, Hydralazine (used to treat high blood pressure), Penicillamine, Isoniazid, a-Methyldopa, Procainamide (used to treat tachyycardia), Sulphasalazine (used in colitis, crohn’s disease and rheumatoid arthritis).

Tentative Association:
Acebutol, Atenolol, Captopril, Carbamezapine, Cimetidine, Dapsone, Ethosuximide, Hydrazine, Oxyprenolol
Phenezine, Phenytoin, Pindolol, Practolol, Propranolol, Propylthiouracil, Quinidine

Case Reports:
Allopurinol, Chloprothixene, Chlorthalidone, Debrisoquine, Ethylphenacimide, Gold Salts, Grisofulvin, L-Canavarine, Methysegide, Oral Contraceptives, Penicillin, Phenybuzatone, Reserpine, Streptomycin
Tetracycline (in particular Minocycline, used for acne).

However, some drugs like methyldopa is also used for short periods in patients with lupus, including in pregnancy.