COVID-19 (Coronavirus) and polycystic kidney disease update

Updated 26 February 2021

We provide some quick facts here on COVID-19 for people with autosomal dominant polycystic kidney disease (ADPKD). The situation keeps changing and rules can differ by area. 

From 5 January 2021, a third lockdown began in England and Scotland. Wales and Northern Ireland remain under tight restrictions too. Please use the hyperlinks on this page to find further information relevant to you.

Your doctor, renal centre, dialysis centre or transplant centre should keep you up to date. Contact them if you’re unsure how services are affected or if you want health advice.

People with normal or mildly reduced kidney function are unlikely to be at increased risk from COVID-19

There is nothing to suggest that people with PKD and normal or only mildly reduced kidney function are at higher risk of getting seriously unwell from COVID-19. You will fall into this group if you’ve been told:

• Your kidney function is 60% or higher
• Your estimated glomerular filtration rate (eGFR) is 60 or higher
• You have chronic kidney disease (CKD) stage 1 or 2.

People with kidney function below 60% are at higher risk from COVID-19

People with moderately or severely decreased kidney function are at increased risk of getting seriously unwell if they get COVID-19. They are classed as ‘clinically vulnerable’. You will fall into this group if you’ve been told:

• Your kidney function is 59% or lower
• Your estimated glomerular filtration rate (eGFR) is 59 or lower
• You have chronic kidney disease (CKD) stage 3 or 4.

People who are receiving dialysis, have had a transplant or have CKD stage 5 are at extremely high risk from COVID-19

People who have had a kidney or liver transplant or who are on dialysis are thought to be at extremely high risk of getting seriously unwell if they get COVID-19. They are classed as 'clinically extremely vulnerable'. People who are not receiving dialysis and have not had a transplant but who have CKD stage 5 are also classed as 'clinically extremely vulnerable'. If you’re in this group, the government advises you take extra steps to reduce your chance of catching COVID-19 (see shielding information later).

People with high blood pressure are unlikely to be at increased risk from COVID-19

People who have high blood pressure (hypertension) are probably no more likely to get seriously ill from COVID-19 than people with normal blood pressure. If you’re taking medicine to reduce your blood pressure, keep taking it.

Your risk of getting unwell from COVID-19 depends on manyfactors

Your risk of getting unwell from COVID-19 depends not only on your kidney health. Other factors that play a role are:

• Your weight (body mass index)
• Sex (registered at birth)
• Ethnicity
• Age
• Postcode
• Living arrangements
• Medical history (having other conditions putting you at higher risk)

If you are clinically extremely vulnerable, shield yourself from COVID-19

People who are clinically extremely vulnerable should take steps to reduce their risk of catching COVID-19.

From 5 January 2021, a third lockdown has begun in England and all people who are clinically extremely vulnerable should shield. The government published guidance on shielding (on 5 January this was yet to be updated to include the latest guidance, but we expect it to update shortly). If you are clinically extremely vulnerable, you should have received a letter or email explaining what this means for you. More people were added to the shielding list in mid-February.

Scotland is also in lockdown and clinically extremely vulnerable persons are advised to shield. If you are in this group, you should have received a letter and can also sign up for text alerts. Guidance on shielding in Scotland is available.

Separate guidance on shielding is available for Scotland, Northern Ireland, and Wales.

In addition to guidance from governments, your doctor might also recommend you take extra precautions. For example, if you’re on the transplant waiting list or had a transplant within the last 3 months, your transplant unit may advise you to shield.

Contact your dialysis centre, transplant centre, kidney specialist or doctor if you’re unsure whether or not you should be shielding.

More information is available on the Kidney Care UK website and through government websites (see links at the bottom of this blog).

Availability of COVID-19 vaccines for people with ADPKD

The first COVID-19 vaccine was approved for use in the UK on 3 December 2020. An independent specialist committee has advised which groups of people should receive the vaccine first. The highest priority is people living in care homes for the elderly and their carers. They are followed by people aged 80 and over, then 75 and over, and so on down the age brackets, ending at age 50.

Persons who are over 16who are clinically extremely vulnerable are listed in the fourth priority group, alongside those aged 70 years and over. This group includes: persons on dialysis, with stage 5 CKD, or who have had a kidney transplant. You can find the list of conditions that to make you clinically extremely vulnerable here.

Other persons in an at-risk group are listed as the sixth priority. This group includes people with CKD stage 3 or 4 (unless they are in a higher priority group because of their age) and adult carers.

You can find the list of conditions that make you clinically extremely vulnerable here.

When will I be offered a COVID-19 vaccination?

This table is based on kidney health only – it does not take into account other diseases or your age. It is possible that you are higher priority than shown.

How well do COVID-19 vaccines work?

The Pfizer/BioNTech vaccine is thought to be about 95% effective in adults who haven’t had COVID-19 before. This means the vaccine would prevent COVID-19 in 19 out of every 20 adults who come into contact with the virus.

The University of Oxford/AstraZeneca vaccine is thought to be 70% effective in adults who haven’t had COVID-19 before. This means the vaccine would prevent COVID-19 in 14 out of every 20 adults who come into contact with the virus.

It is not yet known whether COVID-19 vaccines work well in children or in people who are taking immunosuppressants (including people who have had a transplant). Clinical trials are being done to check this.

Renal Association kidney disease experts say that they would expect the vaccines to offer protection against COVID-19 infection for patients taking immunosuppressants. The British Transplant Society says that “Whilst solid organ transplant recipients were not included in clinical trials, given experience with other vaccinations, there is no evidence to suggest that any of the available vaccinations for COVID-19 would not be safe and protective in this group of patients.”

If you are offered the vaccine, ask your doctor to talk you through the potential benefits, risks and any uncertainties.

On the NHS website you can find out more about the vaccine, including how it is given, how well it works, and possible side effects. 

People taking immunosuppressants should not stop taking them unless advised by their transplant specialist

Stopping your immunosuppression could put your donated organ at risk and increase the chance of you needing hospital treatment.

People taking tolvaptan should get medical advice if they develop a fever

Fever is a possible sign of COVID-19. For people taking Jinarc® (tolvaptan) for ADPKD, fever can also be a sign of liver problems. Please read and follow all advice provided in the leaflet for tolvaptan.

If you’re taking tolvaptan and have a fever, use the online NHS coronavirus service for advice. Ring 111 if you can’t get advice online. Also call your kidney centre for advice.

Dialysis centres have put measures in place to reduce the risk of COVID-19

Please follow the instructions your dialysis centre provides. For example, there may be limits on how many people can go with you and the times you can arrive at the centre. If you have symptoms of COVID-19, don’t visit your dialysis centre before telephoning first.

Support is available to help you cope through the pandemic

The threat of COVID-19 and the changes that we have made to our lives are putting every one of us under strain. We understand that if you’re in a high-risk group or self-isolating, this is an especially worrying, stressful and lonely time.

We encourage you to support one another through our online PKD Charity groups. Stay in touch with family and friends by phone or online. Try not to spend too much time reading news or social media on COVID-19.

We’ve posted some ideas on how to stay physically and mentally active.

MIND, Every Mind Matters and Public Health England have advice on emotional wellbeing, mental health and how to cope in the COVID-19 pandemic.

Where to find more information

Receive updates on the coronavirus and other news, guides and tips from PKD Charity

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Checked and updated 27 February 2021