Updated: 06/11/2020

The PNH service continues to follow the Department of Health advice. In the current lockdown we would advise to read the following whilst doing this to take extra precaution and contact the PNH team for any questions or concerns.

The guidance for all has changed since 5th November 2020

National restrictions now apply to England:

  • You cannot meet socially with anyone indoors unless they’re in your support bubble
  • There are changes to how many people you can meet outside
  • You must not travel in the UK or overseas, unless for a specific reason, like education, work or a caring responsibility

To clarify a patient with a PNH clone on eculizumab or other complement inhibitor we advise to follow this guidance. Evidence from our experience in the UK and internationally the mechanism of action from complement inhibition does not make a difference to getting corona virus infection. The treatment does not protect you or put you at more risk.

We advise:

  • To work from home if possible
  • If not to only if your work place is covid safe with social distancing, masks, regular cleaning, etc

Clinically extremely vulnerable

Advised to stay at home, except for exercise or essential health appointments
This guidance is for everyone in England who has been identified as clinically extremely vulnerable. If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.

This would include patients who have a diagnosis of Aplastic Anaemia who are awaiting or have undergone bone marrow transplantation, or if you are on an immunosuppression currently such as ciclosporin, tacrolimus etc

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.

The guidelines are being updated regularly so please refer to current government guidelines in your area, these might change due to local lockdown rules or change in policy.

This is for all patients with PNH whether they are on treatment or not.

Key Points:

  • Make sure you have a thermometer
  • Take your medication as prescribed -please check you have enough supply
  • If you have symptoms of PNH such as black or red urine, please contact us.
  • If you have a temperature of 38°C or over, contact the PNH National Service:

Contact information

In addition: if you are on a complement inhibitor (eg. eculizumab, ravulizumab or a clinical trial drug) it is important that:

  • Your treatment is NOT to be interrupted.
  • You will need a full course of ciprofloxacin (10 days of 500mg bd), not just the two rescue doses that we have prescribed previously. This is to be used after contacting, and being instructed to by the PNH Service. This is to increase cover; you also need to contact your PNH team if you are unwell.

NB: Please note if you are treated through Kings College you have not been issued with additional ciprofloxacin due to proximity to the treatment Centre

  • Do not take paracetamol for a high temperature unless instructed to do so by the PNH Service.
  • If you have respiratory symptoms definition: sore throat, cough, shortness of breath seek advice.
  • Soliris is licensed only if administered by a health care professional. So unfortunately we are unable to facilitate self-administration.

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, ravuluzimab or a clinical trial drug) need to protect themselves, to reduce the risk of being infected.

Please do not hesitate to contact the PNH team for further advice if needed, we understand the complexity and how difficult it is for each individual.