Updated: 16/04/2020 14:54

In the current time of publicity about the infection with Coronavirus, we kindly ask you to look at this information before contacting the PNH National Service, so that we can better address your remaining questions.

This is for all patients with PNH whether they are on treatment or not. We consider you to be at higher risk than the general public and you should try to self isolate.

  • Make sure you have a thermometer
  • Take your medication as prescribed -please check you have enough supply
  • If you have a temperature of 38°C or over, contact the PNH National Service:
  • If you are a Leeds patient:
  • Office hours: 0113 2068625, out of hours: 07920535918
  • If you are a Kings College Hospital patient:
  • Office hours: 020 3299 3520, out of hours: 020 3299 9000 ask for haematologist on-call
  • If you have symptoms of PNH such as black or red urine, please contact us.

In addition: if you are on a complement inhibitor (e.g. eculizumab [Soliris]) it is important that:

  • Your treatment is NOT to be interrupted.
  • You will need a full course of ciprofloxacin, not just the two rescue doses that we have prescribed previously. This is to increase cover, this will be provided in the coming weeks – you also need to contact your PNH team if you are unwell.
    Please note: If you are a patient at Kings College please contact the team as usual, and the team will provide advice and assessment.
  • Soliris is licensed only if administered by a health care professional. So unfortunately we are unable to facilitate self-administration.

We are doing everything in our power to maintain appropriate home care provision.

Regarding self-isolation

We recommend that you follow the official government‘s guidelines. If you are self-isolating please email the PNH team as to the reasons for this (either to protect yourself or due to yourself of family having suspected COVID-19) so we can ensure the healthcare teams are aware, appropriate precautions can be put in place, and treatment continues as planned.

The following link has the information:

Patients who are immunocompromised and/or on complement inhibition

Patients who are immunocompromised, for example patients taking treatment for aplastic anaemia (such as ciclosporin, eltrombopag, danazol or oxymetholone, post ATG or stem cell transplantation), and patients who are treated with complement inhibitors (such as eculizumab [Soliris]) need to protect themselves, to reduce the risk of being infected. Therefore patients should be self-isolating for their own protection.

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable

If you think you should be shielding (which incorporates additional measures to self isolation) and have not received a letter or you have further questions please contact your local haematologist or the PNH National Service for advice.

Assumptions and Definitions

  • Personal thermometer in the house
  • Write down temperature with date and time in a notebook/calendar
  • If unwell, follow-up temperature regularly
  • Respiratory symptoms definition: sore throat, cough, shortness of breath
  • Patients on complement inhibitor have full emergency course of ciprofloxacin (10 days of 500mg bd). This is to be used after contacting, and being instructed to by the PNH Service.
  • Do not take paracetamol for a high temperature unless instructed to do so by the PNH Service.
  • The PNH service will guide you to your local COVID teams as necessary.

During the COVID crisis we working hard to reduce your risk of exposure, therefore this is a little different from standard procedures: If you are unwell and ON a complement inhibitor (e.g. eculizumab [Soliris]) Please follow the below guidance.