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History of Supplements and Their Research

Why OTC Supplements Have a Place In IC/BPS & Products Available Today

I am often asked what I think about OTC supplements and their use by IC patients. I never anticipated selling supplements via the ICN website because I was focused entirely on patient education and research. That changed in the early 2000’s when some doctors began telling patients that the only treatment for IC/BPS was Interstim®, a surgery that costs thousands of dollars and comes with a strong risk of adverse events. One patient who felt forced to have this surgery called the ICN and was shocked to learn that there were not only other treatments but also a variety of self-help strategies that could help. That’s when I thought “shouldn’t patients have the chance to see the wide variety of options available to them?” That’s exactly when I began to look at supplements more closely.

Supplement Brand History

Millions of dollars have been made with supplements targeting urinary tract infection. From cranberry to today’s Uqora, these are not suggested for patients struggling with bladder pain in the absence of infection (i.e. most IC patients). In fact, cranberry based supplements have triggered bladder discomfort.

The first supplement that gained credibility in the IC/BPS community was Prelief®, which is designed to reduce the acid in foods that can irritate the bladder.(1,2,3) In the past 30 years, it has been used by tens of thousands of patients to enjoy foods without irritating their bladders. CystaQ® (no longer available) was developed by Farr Laboratories in California and was the first to use quercetin, an ingredient that has antioxidant and anti-inflammatory effects.(4)

Desert Harvest Aloe gained followers after one of its founders shared that it had helped calm her bladder symptoms. A  very, very small double blinded study of 8 patients showed that some patients experienced relief from their symptoms.(5) Through word of mouth, this product gained traction throughout the IC community though, to date, there are NO formal studies published in medical journals proving it to be effective for  IC/BPS. The role of aloe has diminished greatly and we only suggest it for short term use during bladder wall flares, specifically AloePath® for its additional nerve calming effect. 

With a large, published research study proving its success, CystoProtek® was the game changing supplement of the early 2000’s that quickly dominated the market. Created by IC researcher, Dr. Theoharis Theoharides, it was the first to combine chondroitin and quercetin to promote bladder health.(7) His study of 252 patients IC/BPS patients who had failed other treatments showed significant improvement in urinary symptoms, particularly for patients with more severe symptoms.(8) While it was the most popular for many years, it lost its position after an unexplained cancer warning on the label damaged customer confidence in the brand.

Cysto Renew® (not currently available) was created by Dr. Geo Espinosa was the first to combine chondroitin with the soothing effects of aloe and the nerve calming effects of lemon balm. This was a sign of supplements to come because it provided more methods of action that could tackle urinary symptoms in multiple ways. 

Natural Approach Nutrition

In 2020, Natural Approach Nutrition entered the IC marketplace with the newest generation of supplements that are masterfully formulated for optimum effectiveness. Their first, BLADDER BUILDER®, was similar to other chondroitin supplements with added probiotics to support the biome and palmitoylethanolamide calm nerves down. An informal one year follow up survey conducted by the ICN found that 60% of the patients who tried it reported fewer flares, less painful flares and shorter flares.  BLADDER REST® is a similar but simpler formula designed for patients who are more sensitive. CYSTOMEND® is a stronger formula.

PEAORA® is the first supplement focused on reducing pain and discomfort. A 2019 pilot study from Italy studied 32 IC/BPS patients who used PEA for six months  They shared that a “significant and progressive  reduction in pain intensity was observed during PEA treatment”, with addition improvements in urinary frequency and, to a lesser extent, bladder capacity. Dozens of studies have found PEA successful in reducing a wide variety of painful conditions, is well tolerated with very few side effects. (9) ALOEPATH® combines PEA with aloe for a enhanced soothing effect.

Support From Physicians and National Organizations

The supplements above quickly gained popularity among patients and prominent IC providers. Dr. Robert Evans (Wake Forest University) frequently discussed supplements in the clinical courses that he taught on IC and encouraged patients to give them a try before attempting more aggressive treatment. They are mentioned at urology and IC conferences and courses. That said, they didn’t gain national support until the release of the 2014 AUA Guidelines for IC/BPS.(10) This national panel of experts placed OTC supplements in their Step One Treatment Options, encouraging patients to try them before the traditional medications (Elmiron®, Elavil® etc.) and bladder treatments (RIMSO-50, Botox, Neuromodulation, etc.) that were known for causing significant side effects and/or risk with their use. When the Guidelines were updated again in 2022, they continued to suggest their use though categorized them under self-help strategies. The AUA does not, however, recommend specific brands.

Low Cost & Affordable For Those Without Insurance

Supplements are far cheaper than most traditional IC treatments (i.e. BOTOX, bladder instillations, neuromodulation) and provide a vital option for patients who have no health insurance inexpensive. They are also a compelling option for patients who lack health insurance. Granted, no supplement can or should say that they can “cure” IC/BPS but they might ease some symptoms.

Key Supplement Strategies

So, how do you what supplements to try? Supplement companies love it if you buy more and more and more. But, that’s not the best way to approach this in my opinion. When I work with patients who call and ask what supplement they should consider, I always ask “what’s the underlying cause” of your symptoms, aka your phenotype. You don’t want to waste money on supplements that have no chance of helping. For example, patients with pelvic floor dysfunction might not find chondroitin supplements helpful, but could do better with a palmitoylethanolamide supplement instead.

  1. Not sure what to try? Your choice should always begin with your IC/BPS phenotype? If you don’t know, watch this video. That will help you determine what supplements make the most sense for your unique case of IC/BPS. https://youtu.be/ePoxU7HaOUY?si=JGbDJKlHAJ7CzXUz
  2. Not all supplements do the same thing. They have different methods of action. I’m not a fan of taking a lot of different supplements at the same time, nor am I a fan of taking high doses. Some companies encourage patients to double the dose if they are struggling with flares which, honestly, seems like a money grab when patients are the most vulnerable. It’s important to try one at a time for a reasonable period of time, say 8 -12 weeks, to see if they might helpful. And, if there are any side effects, stop and reassess.
  3. Beware of any company that promises to cure any condition with a supplement. 
  4. Don’t throw hundreds or thousands of dollars at supplements without asking “Is it really helping?” The AUA says to discontinue treatments that are ineffective and that’s doubly true with the OTC market. How to determine if it is helping? Do a voiding diary for a day or two. Are you peeing less?? Sleeping more??? Pain getting slowly better? Those might good signs that a supplement is helping.
  5. Supplements can cause adverse effects. Chondroitin & aloe based supplements can cause stomach irritation and/or diarrhea in a small number of patients. This is why we suggest patients go slow with any supplement they try. Start with one capsule and wait 24 hours to see if you are sensitive to any of the ingredients. If yes, stop using it. If you seem to tolerate it well, you can gradually increase the dose to the manufacturers recommendations. Please note, however, that some patients might only use half of the suggested dose to get comfort and relief. In other words, more is not necessarily better.
  6. Always talk with your doctor if you have any concerns. While they may not be familiar with IC supplements today, they can certainly give you insight into what ingredients to include or avoid depending upon your medical history.

Supplements In The ICN Shop Today

  • Prelief® is the supplement of choice to reduce acid irritation and to eat risk foods or drinks. Made of calcium glycerophosphate, it acts to reduce acid in urine. Thousands of patients have used this successfully since it was released more than 30 years ago. It’s inexpensive, widely available and supported by a few studies.
  • LACTOFERRIN may help reduce inflammation and Hunner’s lesions in the bladder.
  • BLADDER BUILDER®, BLADDER REST®, CYSTOMEND® and CystoProtek®  may help an irritated bladder wall affected by estrogen atrophy and/or mucosal damage.
  • ALOEPATH® may help soothe the bladder and urethra. It combines aloe with palmitoylethanolamide which makes it more powerful in calming associated nerves. Many patients use AloePath® when they struggle with bladder wall flares.
  • AZO Bladder Pain Relief Tablets act to numb the bladder wall. This is the generic version of Pyridium and is most known for turning urine orange. It may reduce some bladder wall pain but is not effective for pelvic floor discomfort. It should not be taken for long periods of time. It is a great addition to your flare management tool kit.
  • PEAORA®, aka palmitoylethanolamide, doesn’t coat or protect the bladder. Rather, it helps to calm irritated nerves and makes good sense for patients who struggle with nerve sensitivity.
  • PRVNT® combines D-Mannose with proanthacyanadins (PAC’s) to provide the most effective combination to help prevent recurring UTI.
  • BLADDER SMART® is the successor to MultiRight, the first low acid multivitamin developed. With buffered vitamin C and the addition of calcium glycerophosphate, it is a far gentler and low acid vitamin for patients who are acid sensitive.

Supplements That Don’t Make Sense

Cranberry Products – Supplements companies promoting cranberry products like to suggest that all IC patients are struggling with a recurring infection. But this simply is not true for the majority of us who struggle with muscle and/or nerve dysfunction. We do not encourage the use of UTI supplements unless the patient has had two infections in the previous six months or three in a year. They must be confirmed by a urine culture or next generation DNA urine testing. Far too many companies are making millions making supplements that have no chance of helping most IC patients.

Conclusion

The ICN is proud of our role in introducing supplements to patients without access to traditional treatment. Their sales through our shop directly support the vital work and research that we do. From the release of new books to our management of IC Awareness Month, these funds have been remarkably helpful. That said, we may have some bias as well. I encourage you to research the supplements using the links below, talk with your doctors and with other patients who have tried various supplements to get more information. Just remember that with our new understanding that IC/BPS is often driven by pelvic floor dysfunction and nerve inflammation, bladder supplements may not be as helpful as once thought. However, the new products that focus on calming nerves down show great promise. We anxiously await yet more research in this area.

 

References

  1. Bologna RA, et al. The efficacy of calcium glycerophosphate in the prevention of food-related flares in interstitial cystitis. Urology 2001 Jun;57(6 Suppl 1):119-20
  2. Friedlander JA et al. Diet and its role in interstitial cystitis/bladder pain syndrome (IC/BPS) and comorbid conditions. BJU Int. 2012 Jun;109(11):1584-91
  3. Bassaly R, et al. Dietary consumption triggers in interstitial cystitis/bladder pain syndrome patients. Female Pelvic Med Reconstr Surg. 2011 Jan;17(1):36-9
  4. Shoskes D, et al. Quercetin for chronic prostatitis/chronic pelvic pain syndrome. Urol Clin North Am. 2011 Aug;38(3):279-84
  5. Czarapeta BJ. Super-strength, freeze-dried Aloe vera capsules for interstitial cystitis, painful bladder syndrome, chronic pelvic pain, and nonbacterial prostatitis. 1995 NIDDK SCIENTIFIC SYMPOSIUM, San Diego, California
  6. IC Association. Concentrated Oral Aloe Vera for Alleviating IC Symptoms – A White Paper. No date provided.
  7. Theoharides TC, et al. A pilot open label study of Cystoprotek in interstitial cystitis. Int J Immunopathol Pharmacol. 2005 Jan-Mar;18(1):183-8.
  8. Theoharides TC, et al. Treatment of refractory IC/PBS with CystoProtek – an oral must-agent natural supplement. Can J Urol 2008 Dec:15(6):4410-4
  9. Cervigni M, et al. Micronized Palmitoylethanolamide-Polydatin Reduces the Painful Symptomatology in Patients with IC/BPS. Biomed Res Int. 2019 Nov 11:2019
  10. Hanno P, et al. Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome. AUA Guidelines. Published in 2011, revised in 2014 and 2022.

Updated: 081726 – JHO