COVID-19 (Coronavirus) and polycystic kidney disease update

Checked and updated 4 November 2020

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. Please use the hyperlinks below 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 their 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’.ii 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.

People who are receiving dialysis, have had a transplant or have CKD stage 5 are at higher 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, you might be advised to shield by the government or your doctor (see 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.

The shielding programme has ended, but some people might still be advised to shield

People who are shielding take extra steps to reduce their risk of catching COVID-19. The main shielding programme was paused in England, Scotland, Northern Ireland, and Wales at the end of July 2020. However, if you are classed as ‘clinically extremely vulnerable’, you might be advised to shield if your local area has higher rates of COVID-19. Your doctor may also advise you to 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).

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 4 November 2020