What to Keep in Mind About Soliris Therapy When You Have aHUS

What to Keep in Mind About Soliris Therapy When You Have aHUS
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Atypical hemolytic uremic syndrome (aHUS) is a rare genetic disease caused by a combination of genetic and environmental factors that lead to symptoms such as hemolytic anemia (destruction of red blood cells), thrombocytopenia (low platelet count), and kidney failure.

Soliris (eculizumab) by Alexion is the most commonly recommended treatment for aHUS. Here are a few things to keep in mind about this therapy.

Confirm your diagnosis

Before going ahead with Soliris treatment, make sure your diagnosis is confirmed with a combination of blood tests and genetic screening. This is important as Soliris is not indicated for another type of hemolytic uremic syndrome called Stx HUS, which is caused by Shiga toxins produced by E. coli bacteria.

Check your eligibility

Soliris is only available through a risk evaluation and mitigation strategy program of the U.S. Food and Drug Administration in which your doctor must deem that Soliris can offer benefits that outweigh the risk of serious side effects.

Patients taking Soliris are at an increased risk of acquiring life-threatening meningococcal infections. Therefore, Soliris should not be taken if you already have a meningococcal infection or have not been vaccinated against it. Inform your doctor of all medications you have been taking so far and ensure that all vaccinations are done at least two weeks before starting Soliris therapy.

Attend all treatment sessions

Soliris therapy is given through intravenous infusion and the procedure usually lasts for about 35 minutes in adults and about one to four hours in infants. Adults usually receive Soliris weekly for five weeks and then once every two weeks until symptoms improve. Attend all treatment sessions without fail. If you are unable to attend a session, make sure to inform your doctor as soon as possible.

Carry a patient safety card

If you are undergoing Soliris therapy, your doctor will issue you a patient safety card containing details about the possible risk of meningococcal infection. You should carry this card at all times during treatment, and up to three months after the last dose. The card can help quickly diagnose and treat any meningococcal infection.

Monitor post-therapy symptoms

Soliris therapy increases the susceptibility of patients to infections. Therefore, monitor any treatment-related symptoms at least 12 weeks after stopping Soliris therapy. If you or a caregiver notice symptoms, such as confusion, kidney problems, breathing difficulty, a drop in platelet counts, seizures, chest pain, and swelling in the arms and legs, contact a doctor immediately.

 

Last updated: Jan. 27, 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.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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