PKD Charity for Autosomal Dominant PKD
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Treatment for PKD stage 2 and 3

Good morning all

I have just come across this article and thought it would be of interest to this group....

nice.org.uk/guidance/ta358

Has anyone been involved in the trials or have experience/ knowledge of this?

Margaret

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Hello, Tolvaptan is the first ever disease-modifying treatment for ADPKD and is now approved for patients in England, Wales and NI. People with fast progressing ADPKD at CKD (chronic kidney disease) 2 and 3 are potentially eligible.

If you are already seeing a UK nephrologist at a hospital, please contact that doctor and ask if you are eligible. Otherwise, you can ask your GP to refer you for a consultation.

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I have been involved in this trial, when I started I was told that my kidneys filled 80% of my abdomen, I felt very swollen. Two weeks of being on this drug and I started to feel much better, my abdomen felt less bulky and my kidneys decreased in size. My kidney function appears to be worsening at a slower rate because of this drug

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