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PKD Discussion Forums Welcome to the PKD Foundation's Discussion Forums 2019-05-18T08:49:15-05:00 http://forums.pkdconnection.org/feed.php?f=3 2019-05-18T08:49:15-05:00 2019-05-18T08:49:15-05:00 http://forums.pkdconnection.org/viewtopic.php?t=28672&p=29688#p29688 <![CDATA[Living with PKD • Chinese medicine]]>
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

Statistics: Posted by lyonsmik — Sat May 18, 2019 8:49 am


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2019-05-13T12:43:39-05:00 2019-05-13T12:43:39-05:00 http://forums.pkdconnection.org/viewtopic.php?t=28671&p=29687#p29687 <![CDATA[Living with PKD • Jinarc AND/OR Sandostatin (Octreotid) ADPKD]]>
I am taking Jinarc since 20 months (ADPKD) and started no a therapy with Sandostatin (Octreotidum) due to additional liver cysts. The health insurance doesn't defray the costs, because the benefit is not / not yet scientifically proven.

Does anyone has experience with Jinarc and Sandostatin or only with Sandostatin?

Thank you and Cheers, Puffin

Statistics: Posted by Puffin — Mon May 13, 2019 12:43 pm


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2019-05-13T12:23:27-05:00 2019-05-13T12:23:27-05:00 http://forums.pkdconnection.org/viewtopic.php?t=28670&p=29686#p29686 <![CDATA[Living with PKD • Re: New on Jynarque]]>
I started 20 month ago, I am at the highest Level (90/30mg) and I am doing very well. The main side effect is the thirst and the drinking. I drink around 5 Liter a day, and I often feel bloated (hope this is the correct english word for it...sorry) but I have huge organs (kidney and liver), so I guess this is the main reason for that. I often have to go to the ladiesroom - but so do other people. At night time I have to get up mostly once - at the beginning of taking Jinarc I had to go 2-3 times/night.

Just make sure, that you always have a bottle of water with you!

Good luck and best regards
Puffin

Statistics: Posted by Puffin — Mon May 13, 2019 12:23 pm


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2019-05-04T12:37:07-05:00 2019-05-04T12:37:07-05:00 http://forums.pkdconnection.org/viewtopic.php?t=28670&p=29685#p29685 <![CDATA[Living with PKD • New on Jynarque]]> Statistics: Posted by Lauren_kay21 — Sat May 04, 2019 12:37 pm


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2019-03-27T09:48:54-05:00 2019-03-27T09:48:54-05:00 http://forums.pkdconnection.org/viewtopic.php?t=109&p=29683#p29683 <![CDATA[Living with PKD • Re: Pain relief and medical marijuana]]> Statistics: Posted by Herrybraun — Wed Mar 27, 2019 9:48 am


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2019-03-03T19:22:42-05:00 2019-03-03T19:22:42-05:00 http://forums.pkdconnection.org/viewtopic.php?t=22619&p=29682#p29682 <![CDATA[Living with PKD • Re: PKD, chronic pain, and a marriage]]>
There is a great webex presentation about pain management on this website. https://pkdcure.org/resource/pain-and-pkd/

Statistics: Posted by MoonMommy — Sun Mar 03, 2019 7:22 pm


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2019-03-01T15:33:24-05:00 2019-03-01T15:33:24-05:00 http://forums.pkdconnection.org/viewtopic.php?t=28669&p=29681#p29681 <![CDATA[Living with PKD • Unruptured Aneurysm Treatment]]>
About me:
I'm preparing to schedule a craniotomy to have 2 small (1.5MM and 2MM / closely located) saccular aneurysms clipped. I'm a 37 y/o female, diagnosed with PKD at 16, still 100% kidney function and normal blood pressure, both Kidneys full of cysts and enlarged I have a strong family history (mother and 3 uncles) of ruptured and non-ruptured/treated brain aneurysms. I've known about one of my aneurysms for over 3 years. The other one was just discovered recently (unknown if it's new or just a new imaging angle that captures both). For 3 years, my first neurosurgeon told me that my single 1.5MM aneurysm was insignificant, too small (under 7MM) to operate on, and unlikely to cause me any problems, so we would just "watch it" (MRAs every 6 months) to see if it grew. Due to an insurance change, I had to find a new neurosurgeon. The new one insisted on better imaging (CT with contrast, then a cerebral angiogram), which revealed the 2nd aneurysm and recommended surgery. He also says that brain aneurysms don't usually grow.

I was quite surprised to learn that aneurysms as small as 1.1MM can be either clipped (invasive surgery/craniotomy) or coiled (non-invasive procedure). I also found a study from 2015 that showed 37% of ruptures occurred in aneurysms 1.5MM to 5MM. My husband and I have differing opinions on whether the surgery is a good idea and I have a lot of emotional baggage about craniotomies (my mother's was tragic). I'd really appreciate hearing other stories. Maybe some advice? What to expect? So far I know it'll be 2-5 days in the hospital and 4 weeks recovery . . . . so I could use some positive vibes to focus on.

Statistics: Posted by MoonMommy — Fri Mar 01, 2019 3:33 pm


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2018-12-13T02:57:26-05:00 2018-12-13T02:57:26-05:00 http://forums.pkdconnection.org/viewtopic.php?t=28667&p=29678#p29678 <![CDATA[Living with PKD • Pain and nausea]]> Statistics: Posted by Chodgesss — Thu Dec 13, 2018 2:57 am


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2018-12-12T04:40:53-05:00 2018-12-12T04:40:53-05:00 http://forums.pkdconnection.org/viewtopic.php?t=26696&p=29677#p29677 <![CDATA[Living with PKD • Re: PKD]]> Statistics: Posted by garygrover — Wed Dec 12, 2018 4:40 am


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2018-12-11T00:08:36-05:00 2018-12-11T00:08:36-05:00 http://forums.pkdconnection.org/viewtopic.php?t=22619&p=29675#p29675 <![CDATA[Living with PKD • Re: PKD, chronic pain, and a marriage]]> Statistics: Posted by garygrover — Tue Dec 11, 2018 12:08 am


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2018-12-10T06:56:51-05:00 2018-12-10T06:56:51-05:00 http://forums.pkdconnection.org/viewtopic.php?t=106&p=29674#p29674 <![CDATA[Living with PKD • Re: Living with Polycystic Kidney Disease]]>
Here are the clues that someone has PKD :
1) Back or side pain
2) Blood in the urine
3) Frequent bladder
4) High Blood Pressure
5) Fluttering or pounding in the chest

Statistics: Posted by garygrover — Mon Dec 10, 2018 6:56 am


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2018-09-12T22:44:24-05:00 2018-09-12T22:44:24-05:00 http://forums.pkdconnection.org/viewtopic.php?t=106&p=27997#p27997 <![CDATA[Living with PKD • Re: Living with Polycystic Kidney Disease]]> Statistics: Posted by Guest — Wed Sep 12, 2018 10:44 pm


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2018-08-27T23:20:45-05:00 2018-08-27T23:20:45-05:00 http://forums.pkdconnection.org/viewtopic.php?t=26901&p=27889#p27889 <![CDATA[Living with PKD • Pkd and the pain]]> Statistics: Posted by Guest — Mon Aug 27, 2018 11:20 pm


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2018-08-27T21:50:43-05:00 2018-08-27T21:50:43-05:00 http://forums.pkdconnection.org/viewtopic.php?t=26850&p=27887#p27887 <![CDATA[Living with PKD • Re: Starting Jinarc/Tolvaptan]]> Statistics: Posted by Guest — Mon Aug 27, 2018 9:50 pm


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2018-08-27T20:25:16-05:00 2018-08-27T20:25:16-05:00 http://forums.pkdconnection.org/viewtopic.php?t=26850&p=27885#p27885 <![CDATA[Living with PKD • Re: Starting Jinarc/Tolvaptan]]> Statistics: Posted by Cheri — Mon Aug 27, 2018 8:25 pm


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