Chinese medicine

Connect with others who are living with PKD and share stories and encouragement.
Forum rules
Please note: This site contains user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health.
Posts: 1
Joined: Fri Apr 05, 2019 5:18 am

Chinese medicine

Postby lyonsmik » Sat May 18, 2019 8:49 am

I was diagnosed here in Japan with PKD in June 2016. At the time my abdomen bothered me all the time and my eGFR was 54%. My nephrologist advised me to change my lifestyle, drink less coffee, cut out salt, etc, which I did, and to take Tolvaptan (Jynarque): but I wasn't keen because a) it wasn't clear at the time whether my insurance would cover the insane cost of Tolvaptan, and b) the side effects scared me. I discussed the situation with a pharmacist friend who suggested an alternative Chinese medicine called Gorei-san. I told my doctor, who said fine, and he prescribed it for me in addition to some blood pressure pills. I took Gorei-san daily for about 6 months with no effect, and then quite suddenly it started working.

My eGFR, (which had gone down with each successive blood test, 54%, 52%, 51% 49%) suddenly shot up to 62%. Other test numbers were good too. Since then I have continued taking Gorei-san. My eGFR has been hovering around 60%. Although my abdomen is getting steadily larger (it's my liver cysts that are blowing up, not my kidneys), I feel pretty good. No pain, except occasionally a little discomfort when a cyst pops.

It does have a similar side effect to Tolvaptan, in that I have to pee a lot more than before.

But it costs less. Since my doctor prescribes Gorei-san for me, insurance pays. But even if it wasn't covered, it would only cost about US$1.10 a day.

Gorei-san is the Japanese name. In Chinese it's called Wulingsan. Here's some info about it in English: http://www.kyushin.co.jp/english/goreisan.html

Return to Living with PKD

These discussion forums are owned and maintained by the PKD Foundation. To learn more visit pkdcure.org.