How to Deal with aHUS Attacks

Atypical hemolytic uremic syndrome (aHUS) is a rare disease characterized by the formation of small blood clots in the kidneys, blocking blood vessels, and causing damage that can lead to kidney failure. The disease also leads to anemia (low red blood cell counts) and thrombocytopenia (low platelet counts, which can make it hard for the blood to clot).

aHUS can affect anyone at any age, but many patients are first diagnosed after an aHUS attack. These attacks also are common as the disease progresses.

What is an aHUS attack?

aHUS attacks are periods of increased symptoms that the formation of new clots in the kidneys and other tissues cause. For some patients, this may be mild, such as increased fatigue regardless of how much rest they’ve had, or aching joints. For others, it may be in the form of dramatic swelling in the hands, feet, legs, and arms. Some patients may need treatment in a hospital for their symptoms.

The symptoms of aHUS can affect the brain or nerve cells, blood vessels, digestive system, lungs, heart, and muscles.

It’s important to talk to your doctor about testing when new symptoms occur or when your symptoms get worse. Leaving symptoms untreated may make it more likely that kidney damage will occur.

Some patients have only the initial aHUS attack that leads to a diagnosis. Many other patients have recurrent attacks.

How do doctors treat aHUS attacks?

Treatment for aHUS will depend on the specific symptoms you experience during the attack.

Doctors may use plasma exchange therapy. This is a transfusion or replacement of plasma (the liquid portion of the blood) to remove some of the blood factors that cause clotting in aHUS.

Soliris (eculizumab) is a therapy that counteracts the clotting factor that is overactive in aHUS. Ultomiris (ravulizumab-cwvz) is another medication that works in a similar way as Soliris. Researchers also are working on experimental treatments.

In severe cases, patients may need dialysis. This involves filtering the blood with a machine to remove wastes when there is kidney damage. Some patients need dialysis only to support them through an attack; others will need dialysis permanently.

In cases of kidney failure, patients may need a kidney transplant.

Last updated: May 12, 2020

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aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.