What treatment is needed for Lupus Kidney Disease?...more detail

How can you help yourself? Can Immunosuppressant drugs be used? Side effects of immunosuppressant drugs? How long does immunosuppressant drug treatment last? What other drugs may be used?

How can you help yourself?

Help yourself:-

• Eat a healthy diet and keep as active as possible.
• Stop smoking if you possibly can. Smoking with Lupus increases the risks of heart disease and stroke.
• Watch the weight. Of course this is easier said than done, but if steroids are being given, watching what is eaten may control the weight. If someone has been very ill with Lupus, it might also be necessary to eat more. Kidney units have dieticians who can offer expert advice - use that advice!
• Control the amount of fluid taken in every day. Some people with Lupus who get water retention need to reduce their fluid intake; others with urine infections or who are taking the drug cyclophosphamide may need to increase fluid intake. Every person with Lupus needs to check their fluid allowance with their doctor.
• Salt in the diet can make blood pressure and water retention worse, so try to avoid adding salt to any food or cooking.
• Some cases of Lupus get worse after sun exposure, look cool in a large hat and use sunscreen; do not get sunburnt.
• Take the tablets regularly. If they are giving side effects, tell the specialist - do not just leave off the medication.

Can Immunosuppressant drugs be used?

Because Lupus is a disease caused by overactivity of the body’s immune system (see the ‘What causes Lupus’ section on the main Lupus page), reducing the activity of the immune system can reduce the activity of Lupus. The problem is that there are no drugs which attack only the the part of the immune system causing Lupus. The drugs reduce the whole activity of the immune system, so it's good side is damaged. This means that all the treatments can reduce the body's resistance to infection. In the long term, cyclophosphamide or azathioprine also increase the risk of developing some types of cancer.

• steroids (prednisolone)
• cyclophosphamide
• azathioprine

Details of these drugs are given in the ‘Drugs’ section of the NKF website, click here for details.

Side effects of immunosuppressant drugs?

All the immunosuppressant drugs used in Lupus have side effects, and people with Lupus hate taking these drugs. Why are the drugs prescribed, and why will the doctors and nurses keep nagging people about taking them? There are several reasons:-

• Research has shown that only these powerful drugs are effective for kidney disease in Lupus.
• The side effects of finishing up on permanent dialysis treatment are greater than the side effects of immunosuppressant drugs.
• Before the immunosuppressant drugs were available, most people with Lupus and kidney disease died rapidly.
• Doctors hate prescribing drugs with side effects, and would use gentler treatment if it worked.

If the drugs give side effects, there is a great temptation to skip some of the doses, or cut down on one of the drugs. Do not do this without telling your doctor. There are several reasons to be honest:-

• If the doctors know a drug is giving a side effect, there may be a safe alternative drug dosage or type.
• If drugs have to be reduced because of side effects, the doctor can advise a monitoring regimen to detect any increase in Lupus activity at an early stage.
• If the doctor does not know what drugs you are really taking, he or she can never advise the best treatment for you.
• Doctors are not completely daft, and know that many patients are not taking their drugs as prescribed. This makes doctors much more cautious about how the drugs are used. If a doctor knows the truth about which drugs are actually taken, the overall standard of treatment will be higher.

How long does immunosuppressant drug treatment last?

People with Lupus require long term treatment. Lupus cannot be cured. However, sometimes Lupus seems to go away and some or all of the drugs can be stopped. How can doctors tell if Lupus has gone away? Often the person with Lupus knows themselves, but this is not always enough to guarantee that the disease will not return. Therefore doctors do a number of blood tests to try and measure 'disease activity'. Several tests are performed, and none of them give a perfect picture of disease activity. Therefore, in each parson, the tests that give the best idea of disease activity have to be identified. These tests might include:-

• Anti-dsDNA antibody levels. What these mean is described on the ‘What causes Lupus...more detail’ page. The laboratory measures the exact level of this antibody, and it is usually the best measure of disease activity.
• Complement levels. Complement is a chemical used up when antibodies in Lupus are causing tissue damage, and low levels are a good sign of active disease in some people.
• Protein levels in the urine. When Lupus causes protein loss through the kidneys, the exact level of this protein leakage can give an idea of disease activity.
• Creatinine level. Creatinine is a chemical which is used to measure the level of kidney function. If the kidneys are damaged and getting worse, the creatinine level goes up. This might mean that Lupus is active and treatment should not be stopped (although in some cases it turns out that the kidney damage is so bad that there is no point in giving extra treatment for a rising creatinine).

Even if all the blood tests become normal and someone feels completely well, there is a risk of the disease coming back when treatment is stopped. If kidney disease comes back after treatment is stopped, it can cause irreversible damage to the kidneys, even if high doses of immunosuppressant drugs are given straight away. Therefore doctors are cautious, and usually recommend at least two years treatment for Lupus kidney disease. For someone who has had a Lupus crisis which was life threatening, it may be safest to stay on a small dose of drugs for life. Because each Lupus case is different, it is not possible to give individual guidance here, you must ask your doctor.

What other drugs may be used?

Other drugs that may be used

Many drugs from the chemist can be used in people with Lupus, to relieve simple aches and pains (link to OTC section in drugs area) . People with kidney disease often require a range of drugs, to reduce the blood pressure or to remove the build up of water in the body. Extra medication may be needed to reduce side effects of drugs. Thinning of the bones (osteoporosis) can occur with steroid therapy. The oral contraceptive and hormone replacement treatment may need to be used with caution in women who have Lupus.

1) Blood pressure

High blood pressure is common in anyone with kidney disease. High blood pressure means that the blood is stretching the walls of blood vessels in the body too much, and can cause long term damage to the kidneys, and risk strokes (a full section on high blood pressure will be available on the NKF website in 2001). High blood pressure can be controlled by losing weight, reducing the amount of salt in the food, and by taking medication regularly. Medication for blood pressure in described in the drugs section of this website .

2) Water retention

Kidney disease in Lupus often causes water retention in the body, with swollen ankles. This can be treated with reducing the amount of fluid taken in each day, reducing the amount of salt in the diet, and by taking drugs which force extra water out of the kidneys (these are also called diuretic tablets). The main types of blood pressure tablets are called frusemide and bumetanide, and are described in the drugs section of this website . Some people with Lupus do not get water retention, and may be advised to drink extra fluid. Extra fluid may reduce the chances of water infection and reduce the chances of bladder irritation for someone taking the drug cyclophosphamide. Every person with Lupus needs to check their fluid allowance with their doctor.

3) Reduce side effects of other drugs

Some tablets are given to reduce the side effects of others. One of the commonest types would be medication to reduce acid production in the stomach, protecting the stomach against ulcers or irritation caused by steroids.

4) Osteoporosis

If someone is taking long term steroid drugs, there is a risk of osteoporosis (thinning of the bones). This can be prevented by exercising and stopping smoking. For people with osteoporosis, drugs may be prescribed to help strengthen the bones.

5) Oral contraceptive and hormone replacement treatment

There is a small risk that Lupus will flare up if oestrogen (female sex hormone) containing drugs are given. If someone with Lupus wants to take drugs of this type, the up to date information on the risks should be discussed with a specialist first.

Return to Lupus main page (What treatment is needed for Lupus Kidney Disease?)

NKF Controlled Document No. 31, What treatment is needed for Lupus Kidney Disease?...more detail, written 20 November 2000. Last reviewed 27 October 2008.

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349)
and awarded charitable status (Charity Number 1106735).

Give as You Earn contributions No. CAF GY511.

Page created: 20 November 2000

Last updated: 29 April 2009

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