Words in brown are links
PKD Research
There are several animal studies for Polycystic Kidney Disease. Rarely does animal studies of PKD translate into human PKD trials being equal. Trials with PKD humans is needed. Check here for the latest PKD trials. Most require participants between 18-50 and with good kidney functioning greater than 1.2 serum creatinine. Your participation is greatly appreciated. Below are a few ADPKD trials and studies. Selecting participants is as important for PKD trials as study design.
Keep Your Kidneys Healthy
Diet
BHB, Ketogentic diet
PKD Treatments
PKD Research
Monitor alkalinity
Monitor protein
Monitor Blood Pressure
Monitor Water Intake
Testing in animals has been completed by Thomas Weimbs and Dr. Vicente Torres. A low salt, low purines, low oxalates, low protein with intermittent fasting such as 18/6 eating at 9am, 12pm, 5pm, and not eating after that. Perhaps when they come out, BHB for kidney PKD people.
Tolvaptan
Tolvaptan has been released for use in Canada, Japan, and the UK, but not the USA. This can cause a decrease in liver functioning. Have liver function tests done before starting and repeat in 6 weeks. Otsuka has several centers recruiting for an eight week tolvaptan trial. This drug looks very promising. Participants complain of having to get up at night to use the bathroom. Others say this self corrects after awhile. All participants are urged to drink large amounts of water. Tolvaptan plus Pasireotide seems to have a much more cumulative effect than either drug alone.
Octreotide + Tolvaptan
A 2014 study in the PKD animal model shows Tolvaptan + octreotide to have a synergistic effect on cyst formation, better than either one alone. Read about some of the advances for PKD.Metformin a diabetic drug decreases cysts
Take a look at the page on metformin. Should you consider taking it, you may wish to opt for taking some B vitamins as metformin can deplete the body's B vitamins.
Pioglitazone (Actos®)
Another diabetic drug called Actos® may help decrease blood pressure in polycystic kidney disease. Preliminary work in the laboratory with the PKD model has revealed Pioglitazone (Actos®) improves both liver and kidney cysts. Clinical trials will begin to see if Actos® does decrease cyst formation in humans. So far it does so in the PKD model.
HALT
Japan is looking at blood pressure and PKD in a study similar to the design of HALT ADPKD blood pressure ongoing USA study gathering information from 5 ADPKD centers. In Europe they are looking at lanreotide as a medication to halt ADPKD progression. The Mario Negri Institute in Italy had a small study showing that octreotide (↓ PLD liver cysts) analogues were useful for slowing progression of ADPKD. Data from the HALT PKD study shows that pain is a common early symptom in the course of ADPKD. Also from the HALT study date, the incidence of left ventricular hypertrophy (LVH) appears to be decreasing among PKD'rs. According to a 2013 article,
"RAAS inhibitors has been shown to induce regression of LVH, and this may continue to play an important role in the cardiovascular risk management in patients with ADPKD."
PLX5568
This does decrease cyst development but it also promotes renal and hepatic fibrosis. More research is needed.
Water
There is hope that by drinking enough water to shut down vasopressin this in turn will slow down cystic kidney growth. Japan's water trial was not very successful. One going on now at Tufts University seems to hold more promise.
Niacinamide
Niacinamide shows promise for treating PKD. Among niacinamide's many symptoms is flushing. Wait for trials to complete before taking niacinamide.Naringenin
Naringenin is found in lemons, lime, oranges, citrus fruits and seems to prevent cysts from developing. There is not yet a trial with PKD but there is one assessing the value of cardiovascular risk.Sirolimus
Both Italy and Switzerland are testing Sirolimus to see if it will slow down cyst growth. Participants are from 18-80 with a GFR from 45-15.China is conducting a study on the herb Yinang
Triptolide
China is conducting a clinical trial with triptolide. This is a Chinese root herb that can raise intracellular calcium. By raising calcium within the cell walls, researchers are hoping to slow down cyst growth through triggering this calcium mechanism.
More PKD Clinical Trials
Caloric Restriction in ADPKDB3 [University Kansas]
KD019 [Multiple sites USA]
Lanreotide PKD [Paris]
Low Osmolar Diet ↑ water intake [Tufts University]
Mesenchymal Stem Cells Transplantation PKD [Iran]
Naringenin
Sirolimus [Vienna]
Tolvaptan in Late PKD [World Sites]
Triptolide PKD [China]
Factors that affect ADPKD progression
According to this 2014 article
"Predicting factors associated with early adverse structural and/or functional outcomes are considered.
The following factors may help identify patients with autosomal dominant polycystic kidney disease who
are most likely to benefit from early intervention with novel treatments."
PKD1 mutation (particularly truncating mutation)
Male
Early onset of hypertension
Early hematuria
Among women, three or more pregnancies
↑ total kidney volume
↓ GFR
Laboratory markers:
Overt proteinuria
Macroalbuminuria
Frequent gross hematuria
Diet
What if a mild reduction in food intake was all that was needed to help PKD? What if diet can help PKD? We are looking toward the day when a diet will be tried and tested for PKD. This diet will limit symptoms. This diet will prevent cystic kidneys from diminishing kidney functioning. This diet will be something we can do to prevent end stage renal disease from ever happening. This is a bold future for fellow PKD'rs. We hold out the hope that this will become a reality.
A diet dividend: Reducing food intake in mice diminishes the growth of their polycystic kidneys: Reducing food intake in mice diminishes the growth of their polycystic kidneys What if polycystic kidney disease (PKD) could be combatted with a strategy as simple as dieting? Such a finding would surely be welcome news to the 12 million people worldwide with the genetic disease. Now researchers say that reducing food intake in mice diminishes the growth of their polycystic kidneys.
Potassium Citrate
When will clinical trials begin with
potassium citrate? The profoundly detailed work begun by PKD researchers:
Judy and George Tanner PhD on
Potassium Citrate improves renal function in rats with PKD has shown us that
many with PKD can hope to someday limit symptoms.
Alkalinity is truly key for continued kidney health. 2010 saw many alkaline
Potassium Citrate Clinical Trials, one with a positive outcome for reducing GFR in
Chronic Kidney Disease and another with dialysis patients.
Two Hit A Mechanism Active in both PKD and PLD
Dr. Greg Germino presented this mechanism in 1996. It is well established today
as a true mechanism for cyst production. The integrity of DNA
must be maintained through avoiding carcinogenic agents like herbicides, pesticides, chemicals and more.
Recently he published a paper on how a low fat diet
seems to have a positive impact in slowing cyst growth (at least in the laboratory).
A few 2015 Diet Articles
Low in Fat Helps PKD
Low Fat Diet seems to have a positive impact in slowing cyst growth (at least in the laboratory).Food Restriction Helps PKD
Food Restriction Ameliorates the Development of Polycystic Kidney Disease.J Am Soc Nephrol. 2015 Nov 4. pii: ASN.2015020132.
Polycystic Liver Disease
Ursodeoxycholic Acid for Treatment of Enlarged Polycystic Liver.Ther Apher Dial. 2015 Oct 20. doi: 10.1111/1744-9987.12326.
Ursodeoxycholic Acid UDCA was administered for 1 year at a dose of 300mg daily to seven PLD patients. Liver volumes were compared among three time points: 1 year before UDCA treatment, at the start of UDCA therapy, and 1 year after the start of therapy. Liver volume decreased significantly to 98 IU/L after 1 year of UDCA therapy.
UDCA trial Showed little help for PLD liver cysts.
Comparison of volume-reductive therapies for massive polycystic liver disease in autosomal dominant polycystic kidney disease.
Hepatol Res. 2015 Jul 20. doi: 10.1111/hepr.12560.
28 ADPKD patients who underwent TAE, liver resection or liver transplantation for PLD at a single center, and compared their outcomes. Liver resection is a good first-line therapy in patients that have severe symptoms, cyst involvement in several segments with some spared segments and preserved liver function. Liver transplantation is a preferred first-line therapy in patients with poor liver function or whole-liver involvement. Liver transplantation is also a good rescue therapy following TAE or liver resection.
Efficacy of 4 Years of Octreotide Long-Acting Release Therapy in Patients With Severe Polycystic Liver Disease
Mayo Clin Proc. 2015 Aug;90(8):1030-7.
OctLAR over 4 years in selected patients with symptomatic PLD arrested PLD progression, alleviating symptoms and improving health-related QoL. Discontinuation led to organ regrowth..
Feeding soy protein isolate and n-3 PUFA affects polycystic liver disease progression in a PCK rat model of autosomal polycystic kidney disease.
J Pediatr Gastroenterol Nutr. 2015 Apr
Feeding soy based diet resulted in complications of hepatic steatosis attributable to cysts obstruction of bile duct and hepatic vein.
Health risk of exposure to Bisphenol A (BPA)
Rocz Panstw Zakl Hig. 2015;66(1):5-11
BPA is metabolized in the liver to form bisphenol A glucuronide and mostly in this form is excreted with urine. Due to its phenolic structure BPA has been shown to interact with estrogen receptors. PLD cysts contain estrogen receptors
Bisphenol A: an endocrine and metabolic disruptor.
Ann Endocrinol (Paris). 2013
Bisphenol A (BPA), initially designed, like diethylstilbestrol, as a synthetic estrogen, has been rapidly and widely used for its cross-linking properties in the manufacture of polycarbonate plastics and epoxy resins. Exposure to such environmentally relevant doses of BPA has been shown to affect the liver.
The emerging role of endocrine disruptors in pathogenesis of insulin resistance: a concept implicating nonalcoholic fatty liver disease.
Curr Mol Med. 2012 Jan;12(1):68-82.
Certain endocrine-disrupting chemicals EDCs may be responsible for inducing alterations similar to those encountered in Nonalcoholic fatty liver disease NAFLD either directly through a hepatotoxic effect and/or indirectly by triggering hepatic and systematic insulin resistance IR.
Inhibition of Human Hepatic Bile Acid Transporters by Tolvaptan and Metabolites: Contributing Factors to Drug-Induced Liver Injury
Toxicol Sci. 2015 Oct 26. pii: kfv231.
Based on this date, inhibition of hepatic bile acid transport may be one of the biological mechanisms underlying tolvaptan-associated liver injury in patients with ADPKD.
