PNH National Services

Guidelines for PNH, Aplastic Anaemia and COVID-19

National advice relating to COVID has changed since the pandemic began. We will continue to update the website in response to changes in the national guidance.

Following guidance from the Department of Health, we advise that all patients with PNH should be vaccinated against COVID, ideally with three doses and a booster. This is to ensure that patients with PNH have the highest level of protection against COVID.

If you have any concerns about receiving a vaccine, please contact your PNH specialist centre. If you develop side effects or symptoms from your PNH after receiving a vaccine, please also contact your PNH specialist centre.

Monoclonal antibodies and antiviral treatments which are used to treat people who are at higher risk of becoming unwell with COVID are being used in people over 12 years old. Patients with PNH may be eligible for these therapies, so if you develop COVID symptoms, please contact your PNH centre to discuss this issue.

Updated: 12/04/2022

COVID vaccination for patients with PNH and Aplastic Anaemia

We are sure you are aware that the COVID vaccination has now been approved for use by the MHRA. There are several different vaccinations that will be available. Patients will be invited for vaccination according to their clinical indications/criteria as published by the government (see below and reference https://www.gov.uk/coronavirus).
The clinical trials were undertaken in healthy volunteers and not in patients that have PNH or aplastic anaemia.
Due to the severity of COVID-19 infection, we advise the majority of our patients to undergo the vaccination when invited to do so, unless you have a specific reason not to.
The vaccinations currently are intra-muscular (given into a muscle) if you have a low platelet count of less than 30×10*9/l should seek advice from your local haematologist before proceeding as this can be associated with bleeding.

If you have not as yet had your covid vaccination, and you would now want to have this, contact your GP or local vaccination centre.

We encourage all patients to undergo vaccination for coronavirus when invited to do so

Following the incidence of a small number of patients having episodes of thrombosis following the AstraZeneca vaccination, we advise the following in line with government recommendations:

  • If you have received your first vaccination without thrombotic complications, please go ahead and receive your second vaccination.
  • If you have not received your first vaccination, and you are under 30 years of age, you should be offered an alternative vaccine, if available. However, if no alternative vaccination is available, consider accepting the AstraZeneca vaccination.
  • If you would like to discuss your vaccination further, please contact your PNH team (Leeds, London or Scotland).
    * https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine/

For patients with PNH

For patients on complement inhibition such as Soliris, vaccination can be undertaken when invited to do so, there are no timing restrictions advised.

There is a small risk the vaccination may affect your PNH symptoms, particularly if you are not on complement inhibition (with a high PNH clone). This is theoretical and not proven. We would advise if symptoms do occur that you contact the PNH team.

For patients with Aplastic Anaemia

Where possible, we would advise proceeding with vaccination unless you have a contra-indication. If you are within 6 months of receiving ATG it is possible you may not respond to the vaccine, we would advise discussion with your local haematology team before undergoing vaccination.

If you have low platelets (less than 30×10*9/l) then you should contact your local haematology team before proceeding as the vaccination is currently given into a muscle.

If you have any questions please do not hesitate to contact your PNH team (Leeds, London or Scotland) or your local haematology team.

Booster Vaccination

Patients with PNH on complement inhibition and those with aplastic anaemia on immunosuppression should receive 3 primary vaccines, followed by a booster vaccine 3 months after the 3rd primary vaccine dose, as per JCVI guidance.

Patients with PNH not on complement inhibition and those with aplastic anaemia not on treatment should receive 2 primary vaccines and a booster.

COVID-19 Guidance

The PNH service continues to follow the Department of Health advice. We have retained the below information for reference currently.

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.

In addition: if you are on a complement inhibitor (E.G. 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 500 mg 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 King’s College, you have not been issued with additional ciprofloxacin due to proximity to the treatment centre.

PLEASE NOTE:

Do not take paracetamol for a high temperature unless instructed to do so by the PNH Service.

If you have respiratory symptoms E.G: sore throat, cough, shortness of breath – seek advice.

Soliris and Ultomiris are 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, Ravulizumab 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.

Contact Information

  • If you are a Leeds patient: Office hours: 0113 2068625, out of hours: 07920535918
  • If you are a King’s College Hospital patient: Office hours: 020 3299 3520 / 1039, or if urgent 07623 904 512 and request pager number KH 7684, out of hours: 020 3299 9000 ask for haematologist on-call.