Thomas Weimbs, PhD & Jessianna Saville, RDN

Autosomal dominant polycystic kidney disease (PKD) is a common genetic disorder with limited drug therapy options. PKD progresses relentlessly leading to dramatic and often painful kidney and liver enlargement. Approximately 60% of affected individuals develop chronic abdominal, flank, and back pain (PKD-associated pain) [1,2,3] which has a significant adverse impact on quality of life [4].

Metabolic and inflammatory factors and micro-crystal injury, key drivers of ADPKD progression, play a key role in disease-related pain. Additionally, overweight/obesity worsen pain due to mechanical abdominal compression by enlarged kidneys and liver. Analgesic pharmacological options are limited due to nephrotoxicity with long-term use, and the potential for addiction with opioids. Effective and safe pain management is urgently needed for individuals with ADPKD.

The Ren-Nu Program (ren-nu.org) is an online, dietitian-led program that utilizes a kidney-safe form of ketogenic metabolic therapy (KMT), combined with reduction of the lithogenic (kidney stone) risk [5]. An integral part of Ren-Nu is Santa Barbara Nutrients’ novel medical food KetoCitra® that provides exogenous beta-hydroxybutryrate (BHB) to support ketosis together with citrate and alkaline base to reduce the lithogenic risk. Ren-Nu has been used by >150 PKD patients to date and focuses on a plant-dominant ketogenic diet, nutrition education, peer support, mindfulness training, aided by digital tools [5].

A survey was conducted (May 2023) among former participants who completed the 3-month Ren-Nu program within the last 2 years (59 total responses). 45 responders reported that they experienced pain or discomfort due to their PKD before starting the Ren-Nu program. Remarkably, 85% of those with prior pain/discomfort reported improvement (“greatly” or “somewhat”) after the Ren-Nu program (see graph).

Note that this is a preliminary result based on an informal survey. The Ren-Nu team will be conducting a formal study that will be reported in the scientific literature.

We are delighted by this highly promising initial result which matches the experience of the dietitians who have been directing the Ren-Nu program.

To learn more about the Ren-Nu program, visit the Ren-Nu website: https://ren-nu.org/

To learn more about KetoCitra®, visit https://santabarbaranutrients.com/ketocitra/

KetoCitra is a medical food for the dietary management of individuals with chronic kidney disease including polycystic kidney disease. KetoCitra can be taken by itself or in conjunction with diet & lifestyle changes. Learn more about the recommended diet & lifestyle changes here: https://santabarbaranutrients.com/kidney-health-toolkit/

Ren.Nu was a collaboration between Santa Barbara Nutrients and Kidney Nutrition Institute run from 2021-2024 and this group nutrition intervention was led by specialized renal dietitians, implementing a low oxalate, plant-heavy ketogenic approach incorporating the BHB- citrate product KetoCitra for individuals with polycystic kidney disease.

References

1. Bajwa ZH, Sial KA, Malik AB, Steinman TI. Pain patterns in patients with polycystic kidney disease. Kidney Int. 2004;66(4):1561-1569. pubmed.ncbi.nlm.nih.gov/15458452/
2. Nowak KL, Murray K, You Z, et al. Pain and Obesity in Autosomal Dominant Polycystic Kidney Disease: A Post Hoc Analysis of the Halt Progression of Polycystic Kidney Disease (HALT-PKD) Studies. Kidney Med. 2021;3(4):536-545.e1. pubmed.ncbi.nlm.nih.gov/34401721/
3. Hogan MC, Norby SM. Evaluation and Management of Pain in Autosomal Dominant Polycystic Kidney Disease. Adv Chronic Kidney Dis. 2010;17(3):e1-e16. pubmed.ncbi.nlm.nih.gov/20439087/
4. Winterbottom J, Simms RJ, Caroli A, et al. Flank pain has a significant adverse impact on quality of life in ADPKD: the CYSTic-QoL study. Clin Kidney J. 2022;15(11):2063-2071. doi:10.1093/ckj/sfac144
5. Bruen DM, Kingaard JJ, Munits M, et al. Ren.Nu, a Dietary Program for Individuals with Autosomal-Dominant Polycystic Kidney Disease Implementing a Sustainable, Plant-Focused, Kidney-Safe, Ketogenic Approach with Avoidance of Renal Stressors. Kidney Dial. 2022;2(2):183-203. doi:10.3390/kidneydial2020020