Treatments are becoming available
If you are from a family with PKD (Autosomal Dominant Polycystic Kidney Disease), now it’s worth knowing
- Have I got it? – At least if you’re over 18 years, it’s worth knowing this.
- Could I benefit from treatment? – You should get an occasional check to see whether you could be on treatment to slow PKD.
This guidance comes from the Edinburgh Renal Unit. However it may be more widely useful.
More about PKD and its treatment
Autosomal Dominant Polycystic Kidney Disease (PKD for short) is an inherited condition that causes kidney cysts, and some other problems. In some people it causes kidney failure. It usually runs in families, but sometimes comes up as a new diagnosis. [more about PKD]
The first treatment to slow down PKD, Tolvaptan (Jinarc), has been available in the UK since 2016. It does have side-effects, and it has to be taken for many years to get benefit from it. So it is reserved for people more likely to develop kidney failure. The main ways of spotting this is by watching kidney function (but it is quite late when this falls), and measuring kidney size. But your family’s experience, and the exact mutation (if known) may give additional information. There is more information about this
- In our full patient info (this link goes straight to the Treatment section). It is quite detailed, and suitable for all readers.
- For healthcare professionals, from our Tolvaptan algorithm and prescribing information.
Anyone can read either of these. Note that the guidance relates to Scottish availablity of Tolvaptan. It is not available in all countries.
- Short introduction to PKD – a shorter and simpler introduction
- Full information about PKD for patients and others, including treatment with Tolvaptan
- Details of our PKD pathway – mainly for referring GPs and specialist professionals. Shortcut bit.ly/pkdedren
Acknowledgements: The author of this page was Neil Turner. It was first published in April 2016. The date it was last modified is shown in the footer.