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Author Topic: Clinical Trials: Sirolimus In Autosomal Dominant Polycystic Kidney Disease And..  (Read 2022 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: January 29, 2011, 01:28:52 AM »

Sirolimus In Autosomal Dominant Polycystic Kidney Disease And Severe Renal Insufficiency

Sirolimus In Autosomal Dominant Polycystic Kidney Disease And Severe Renal Insufficiency (SIRENA-II)
This study is currently recruiting participants.

more info: http://clinicaltrials.gov/ct2/show/NCT01223755?cond=%22Renal+Insufficiency%22&rank=99
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
huldafolk
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« Reply #1 on: February 10, 2011, 11:53:41 AM »

I have ADPKD , so does my 22 year old daughter>  We have just had her in to the Neph. for future follow up as condition progresses. No issues now, other than HBP.  She could decrease salt usage, lose a few pounds and be more active. My interest is with the pharmacological treatments that may be coming down the pipe.  Any knowledge as to if and when this or any other drug could come to market for this disease?
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1980 diagnosed with ADPKD
2003 EMERG. Bi-lateral nephrectomies IVC STENT
2003-now 3x/week 4hours each hemo at clinic
2003-2004 multiple complications /ileostomy
2004 reversal of ileostomy
2010 colostomy
2003 to now ,on transplant list(on and off due to complications)
8 years on list> said to be at top of list for transplant.
2010 RCA Heart STENT
2011 Restent RCA with Drug Eluting (70% closed in 3 months)
LAD stent with drug eluting (66mm long stent)
On transplant list again!!2011/3
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: February 10, 2011, 06:38:46 PM »

This clinical trial started 4 months ago - and it says "This study is currently recruiting participants" but it's located in Italy. I think it will be quite awhile before it's available, but your daughter may want to ask her doctor about joining a clinical trial - if possible.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
greg10
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« Reply #3 on: February 11, 2011, 06:23:12 AM »

Also known as Rapamycin, this is the famous antibiotic/antifungal that was initially discovered on Easter Island.
http://en.wikipedia.org/wiki/Sirolimus

One of the 'side effect' of Rapamycin is that of life extensions in eukaryotes.  In mice, "in a 2009 study, the lifespans of mice fed rapamycin were increased between 28-38% from the beginning of treatment, or 9-14% in total increased maximum lifespan."
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
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