Menu
Close

aHUS: Atypical Haemolytic Uraemic Syndrome

Meningitis B outbreak

We are aware that there has been a number of cases of meningococcal disease in Kent.  This has affected young people so far, and people attending “Club Chemistry” between 5th and 7th March are encouraged by the UK Health Security Agency (UKHSA) to come forward for preventative treatments – currently this is in the form of antibiotics and vaccination against the Meningococcal B strain.

The UKHSA are looking into these infections, and identifying those they believe have been in contact with infected people.

We recognise that this may cause worry for aHUS patients being treated with eculizumab or ravulizumab (because they are at greater risk of getting meningococcal disease).

Patients on either eculizumab or ravulizumab will have been vaccinated against Men ACWY and also Meningitis B.

The aHUS specialist nurses will continue to monitor vaccination response and offer boosters of ACWY as required. A booster for Men B is offered every 5 years. An earlier booster should not be required.

We advise the following for patients on eculizumab or ravulizumab:

  • Continue to take your oral antibiotics as prescribed
  • Wear your wristband which states you are at increased risk of meningococcal disease
  • Know signs and symptoms of meningococcal disease and seek URGENT medical advice if you think you may have this (you can find signs and symptoms listed in the leaflet below).
  • If you go to hospital because you think you may have meningococcal infection, show your healthcare professional your “at risk of meningococcal infection” card (if you need any more, please contact us and we can post some out to you) – nuth.ahus.nurses@nhs.net
  • Let the healthcare professional know that you are on eculizumab or ravulizumab, and that you are at increased risk of meningococcal infection

Further information on meningococcal disease can be found:

 https://www.atypicalhus.co.uk/wp-content/uploads/2025/11/Meningococcal-infection-leaflet.pdf

 

Publication of the oral iptacopan therapy in patients with C3 glomerulopathy: a randomised, double-blind, parallel group, multicentre, placebo-controlled, phase 3 study

The oral iptacopan APPEAR-C3G trial, led by Professor David Kavanagh, has been published here in The Lancet.

This trial looked at the safety and efficacy of iptacopan vs. placebo in patients with C3 glomerulopathy.
The results from this clinical trial are promising, showing it was an effective treatment demonstrating a favourable safety profile.

Until now there has been no effective treatment for this condition and most patients progressed to end-stage kidney failure. This treatment has been shown to stop protein loss from the kidneys and stabilise kidney function.

Publication of the Stopping Eculizumab Treatment Safely in aHUS (SETS aHUS) Trial

The SETS aHUS trial, led by Professor Neil Sheerin, has been published here in The Lancet Regional Health Europe.

This trial looked at whether Eculizumab could be stopped in some aHUS patients without causing any harm to them.

The results from this clinical trial are very encouraging, demonstrating that it was as safe to stop treatment as continuing with Eculizumab, provided patients were adequately monitored and knew what to do in the case of suspected aHUS relapse.

We are currently in discussion with NHS England about what the trial findings mean for aHUS patients, and we will be in touch with all of our patients on treatment over the next few months to discuss the trial, and what the results mean for them.

patient icon

I'm a patient

Click here for patient information regarding aHUS and C3G

Emergency Referral

Refer Now
clinician icon

I'm a clinician

Click here for clinical information regarding aHUS and C3G

Skip to content