COVID-19 (Coronavirus) and polycystic kidney disease update

Updated 3 May 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. 

In late March / early April 2021 the latest lockdown began in ease, although some restrictions remain in England, Scotland, Wales and Northern Ireland. 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 many factors

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)
• Whether or not you have been vaccinated

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.

On 31 March 2021, the shielding programme in England ended once again for people who are clinically extremely vulnerable.

If you’re clinically extremely vulnerable, government advises you to continue to take extra precautions to protect yourself including:

• having two COVID-19 vaccination doses
• maintaining social distancing from persons other than your household/bubble
• when meeting people inside (once allowed), keeping areas well ventilated
• working from home if possible.

Please see the government’s guidance on shielding and protecting people who are clinically extremely vulnerable for more information.

Separate guidance 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. Over half the adult population in England has now received their first dose. 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.

Persons who are over 16who are clinically extremely vulnerable are listed in the fourth priority group, alongside those aged 70 years and over. In England, all clinically extremely vulnerable persons should now have been offered their first vaccination, and over 90% have had it. 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. It also includes adults who live in the same house as a person who is taking immunosuppressants (including people who have had a kidney transplant).

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 in the general population?

The vaccines protect most people from coronavirus with 3 to 4 weeks of having the jab.

• 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.
• The Moderna vaccine is thought to be 94% effective in adults who haven’t had COVID-19 before.xxxiv This means the vaccine would prevent COVID-19 in almost 19 out of every 20 adults who come into contact with the virus.

How well do COVID-19 vaccines work in people on dialysis or who have had a transplant?

We are getting a lot of questions from our supporters about how well the COVID-19 vaccines work for people who are on dialysis or who have had a kidney transplant. We understand why this information is so important to you.

Research is being done to answer this, and the results are starting to come though. However, it is too early to know for sure, especially as the results so far are mixed.

So far research shows:

• Dialysis patients: Studies show that people on dialysis make antibodies against coronavirus about 7 weeks after having the second COVID-19 vaccine shot. Therefore, they are likely to have some protection from the disease after this time. This isn’t yet proven.
• Transplant patients: Studies show that people who have had a transplant make some antibodies after having a COVID-19 vaccine, but possibly not as strongly as healthy persons. We don’t yet know what happens after week 7. More research results should give a clearer picture by late spring.

Therefore, if you’re receiving dialysis or have had a transplant, it is especially important that you continue to take precautions to reduce your risk of catching COVID-19, even if you have received both vaccine shots.

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 3 May 2021