Tolvaptan during the COVID-19 epidemic

We are continuing Tolvaptan prescribing during the epidemic, but have to make some changes to make that possible.

Patients with PKD but no other conditions have the same risk as other patients with CKD. Read more about CKD and COVID-19 at edren.org/covid

For patients taking Tolvaptan:

  • It’s fine to stay on Tolvaptan if you are well. Stop it if you’re poorly.
  • Temporarily we are not starting any new patients on Tolvaptan.

If you know anyone waiting to be assessed for Tolvaptan treatment – scans to estimate kidney size will unfortunately be delayed.

Testing and prescriptions

Patients on Tolvaptan must still have monitoring blood tests, and the drug has to be issued from hospital.

  • We’re looking into the safest and simplest ways to do this while minimising visits, and expect to be in touch with everyone who has appointments coming up.
  • For patients who currently get bloods done by their GP, we hope this will continue. If this becomes a problem please contact us (see next paragraph).

If you need to contact us, the best ways are:

  • Call 0131 242 1244 and leave a message explaining that it’s about Tolvaptan and PKD.
  • PatientView message. This is a good time to check you can log in! When you do, check we have the right email address and mobile phone shown for you.
  • Over the next few days we’ll try to send a PatientView message to everyone from us as a group, that you can reply to if you need to contact us.
  • Email: For the moment use nturner2@nhs.net – please understand there may be delay in replying.

Finally, please do follow all recommended precautions, and we do hope you’re all well and coping with everything.

Paul Phelan
Neil Turner
Sarah MacInnes
Maggie Davidson
Jess McNiff