Kidney or renal involvement in systemic sclerosis may be mild or very serious in nature. Early signs of kidney involvement may include mild hypertension (high blood pressure), protein in the urine and blood test abnormalities. You will find out more about other symptoms, treatments and looking after yourself.
Each kidney weighs about 150g and is located at the back of the abdomen protected in part by our ribs from behind. They are very hard working organs taking about one fifth of the blood pumped by the heart every minute and cleaning it of wastes and water. Although this cleansing function is the best known job of the kidneys they also perform many other very important functions. These include controlling the production of red blood cells, the strength of bones, the acidity of the blood and, very importantly, the kidneys help to control blood pressure.
Although it is quite common for kidney function to be mildly reduced in scleroderma, this is not usually a major issue. If having scleroderma causes the kidneys to run at 50-70% of normal, this should still be sufficient for them to do their job adequately.
The beginnings of a crisis may be noticed when blood pressure is checked at the patient’s GP surgery or at a hospital clinic. If the doctor finds protein leaking in the urine, which was not present before, he/she may also become suspicious that all is not well with the kidneys. The high blood pressure often causes the person to have a severe headache or blurred vision. Breathlessness, nausea and vomiting may also ensue. Often urine output remains much the same until the problem is quite advanced. A feeling of palpitations or fast beating heart may also occur. Some people have seizures caused by the very high blood pressure. The blood supply to the kidneys is crucial in this task. If the kidneys are not getting enough blood they set in motion a train of events which raise the body’s blood pressure to increase blood supply to the kidneys. A small proportion of people with systemic sclerosis suffer from slightly high blood pressure which is easily controlled with medication and they may have some protein leaking into their urine. These people do not worry us so much, as everything is under control.
However, about 5-10% of people with systemic sclerosis (usually, but not only, those whose skin is worsening fast) develop severe, uncontrolled high blood pressure which results from blood vessel changes within the kidney (something like Raynaud’s Phenomenon) which over a short period of time starves both kidneys of blood and oxygen and sets in motion the “normal” response of raised blood pressure. In this case, the high blood pressure does not return to normal and continues to rise and rise, eventually destroying the kidneys and damaging the heart and lungs of the patient if it is not treated. The is called a scleroderma (systemic sclerosis) renal crisis and needs expert medical attention as soon as possible.
The symptoms of scleroderma renal crisis are:
A patient undergoing a scleroderma (systemic sclerosis) renal crisis needs urgent admission to hospital. First the diagnosis needs to be confirmed and the severity assessed. This involves blood tests to measure the level of wastes in the bloodstream and to see how badly the kidneys have been damaged. Chest X-rays, cardiographs and urine tests need to be done. The back of the patient’s eyes need to be examined with a special instrument (an ophthalmoscope: similar to that used for looking into people’s ears) to see if there are signs of very high blood pressure. Later, when blood pressure has been brought under control, a kidney biopsy (taking a tiny piece of kidney with a needle through the back) may need to be done to see how much, if any, recovery of kidney function can be expected.
The mainstay of treatment is to lower the patient’s blood pressure. This is achieved by using a combination of drugs by mouth and into the vein. Patients will need to take the blood pressure tablets for many years. Sometimes, in special circumstances, blood pressure needs to be lowered quickly but, generally, slower reductions in blood pressure over 10-14 days are aimed for. Some of the newer medicines used are very effective at lowering blood pressure but they may make the patient feel flushed. Some painkilling drugs are harmful to the kidneys and need to be stopped if the patient is taking them. The patient’s kidney function and blood pressure needs to be checked daily and dialysis (artificial removal of wastes and water from the body) can be started if the kidneys fail completely.
The best treatment can be administered if the patient comes to hospital as soon as possible after the crisis begins. Everyone with scleroderma renal crisis will initially need to be looked after in hospital. Some may require intensive care, coronary care or the specialist renal ward. Blood pressure medication will be given, and dialysis may be required if the kidneys have failed completely. People who do not recover after two years of dialysis may be candidates for a kidney transplant. Unless treated promptly, renal crisis leads to kidney failure, a condition in which the kidneys lose their ability to eliminate waste products from the body. The treatment of choice involves anti-hypertensive drugs that belong to the category of ACE inhibitors. These medications are quite effective to control blood pressure and stabilize or improve kidney function. In cases of severe kidney failure, dialysis may be required. People with scleroderma are advised to have their blood pressure and kidney function monitored at regular intervals. People may recover successfully from renal crisis, but only if the problem is recognized and treated quickly.
Although living with a chronic illness like SSc can affect your emotional wellbeing as well as your physical health, there are some positive steps you can take to help reduce the overall impact and maintain your quality of life. Treatments will also work best when you play an active role alongside your healthcare team, and there certain things you can do to help make your treatment as successful as possible and reduce any side effects.
Drinking plenty of fluid will help your kidneys function properly. Your urine should be straw-coloured. If it's any darker it may be a sign of dehydration.
During hot weather, when travelling in hot countries or when exercising strenuously, you need to drink more water than usual to make up for the fluid lost by sweating.
Many people living with systemic sclerosis may experience symptoms that can lead to a poor appetite and weight loss. Because of this, it is really important to choose a balanced diet to ensure you get all the vitamins and minerals and maintain weight within a healthy range. Doing so may help you to avoid the risk of developing heart, lung and kidney problems.
Have your blood pressure checked regularly. High blood pressure has no symptoms, but it can increase your risk of kidney and heart problems.
You can get a simple, quick and painless blood pressure check free of charge at your GP surgery and many high street pharmacies.
If your blood pressure is higher than it should be, a GP can suggest lifestyle changes or, if necessary, prescribe medicine to reduce your blood pressure.
An ideal blood pressure is considered to be between 90/60mmHg and 120/80mmHg.
Read more about how to prevent high blood pressure
Do not smoke or drink too much alcohol
Try to stop smoking completely and limit the amount of alcohol you drink
Both men and women are advised not to drink more than 14 units of alcohol a week on a regular basis
Read more about how to cut down on alcohol
Drinking too much alcohol and smoking both raise your blood pressure. High blood pressure is one of the most common causes of kidney disease
Being too heavy raises your blood pressure, which is bad for your kidneys. Try to keep yourself at a healthy weight by keeping active and not overeating.
Your body mass index (BMI) is a helpful way of checking whether you're a healthy weight. You can use the healthy weight calculator to work out your BMI.
Aim for at least 150 minutes of moderate-intensity exercise, such as walking, cycling or swimming, every week.
Read more about how to lose weight
Also, see the physical activity guidelines for adults under 65 and the physical activity guidelines for older adults (65 and over).
SRUK are here to support you and we offer a number of ways to access information and resources, find support and connect with others who may be in a similar situation. Please give us a call on 020 3893 5998 and we will be very happy to help you.
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If you have a question and you cannot find the answer, please contact us at info@sruk.co.uk and we can forward it to a specialist on your behalf.
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