Interstitial Cystitis Network IC Expert Guest Lecture Transcript
Date: February 8, 2001
Topic: The Use of Quercetin and CystaQ in Treating IC
Speaker: Dr. Daniel Shoskes, Cleveland Clinic of Florida
Moderator: Jill Osborne, ICN Founder
(icnmgrjill) Greetings everyone and welcome to the second Meet the IC Expert lecture for the year 2001! Tonight we welcome Dr. Dan Shoskes of the Cleveland Clinic of Florida, who comes tonight to share his research results and thoughts on the use of quercetin and Cysta-Q in treating IC.
(icnmgrjill) We'd link to thank our sponsors for tonight's chat: Farr Laboratories (makers of Cysta-Q) and AKPharma (makers of Prelief). With their support, this and many other IC support activities are made possible. We are very grateful that they believe in the needs of IC patients.
(icnmgrjill) Welcome Dr. Shoskes! It's nice to have you back, especially when we're not having an earthquake! (We had a big earthquake at the start of his last chat. It was very memorable!).
(drshoskes) Well, we may not be able to count votes here in Florida... but at least the power is on!
(icnmgrjill) Oh geez.. rub it in! At least we have power tonight, maybe not tomorrow, but we've got our systems running tonight. Let's go ahead and plug this presentation in.
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Bioflavonoids are polyphenolic compounds found in plants, especially onions, spices, green tea, and red wine. They have anti-oxidant properties, both as free radical scavengers and as inhibitors of xanthine oxidase. In addition, they have anti-inflammatory properties, blocking both chemokines and cytokines and they interfere with tyrosine kinase enzyme activation, inhibiting the division and growth of T cells. Interestingly for IC, some bioflavonoids have been shown to block mast cell activity. Finally, they have antimicrobial and anti-fungal properties. We have focused our research interest on the bioflavonoid quercetin.
Many investigators believe that IC and chronic nonbacterial prostatitis are similar disorders, if not one and the same. In a recent study of ours in men with nonbacterial prostatitis, 67% of patients taking a purified quercetin 500 mg capsule twice a day had a significant improvement in symptoms (at least 25% improvement in symptom score) versus 20% of the men taking placebo. Using a quercetin formulation that includes bromelain and papain to enhance quercetin absorption (Prosta-Q: http://www.prostaq.com) 82% of the men had a significant improvement in symptoms [Quercetin in Men with Category III Chronic Prostatitis: A Preliminary Prospective, Double Blinded, Placebo Controlled Trial Shoskes DA, Zeitlin I, Shahed A, Rajfer J. Urology, 54(6):960-963, 1999].
By obtaining samples of prostate fluid before and after therapy with Prosta-Q, we were able to show several objective changes. Inflammation decreased, oxidative stress (a marker of inflammatory cell activation) decreased, cytokines decreased and beta endorphins (natural pain killers in the body) increased [Oxidative Stress in Prostatic Fluid of Patients with Chronic Pelvic Pain Syndrome: Correlation with Gram Positive Bacterial Growth and Treatment Response. Shahed AR, Shoskes DA. Journal of Andrology, 21(5):669-675, Sept-Oct 2000].
Given the similarities between prostatitis and IC, we wished to study bioflavonoids in IC as well. Early attempts with pure quercetin were not encouraging. Since our only contact between drug and bladder was in the urine, we felt that additional antioxidants might be necessary to achieve the desired result. The supplement Cysta-Q was formulated for this purpose (http://www.cystaq.html). In addition to the quercetin, bromelain and papain, it also contains other herbal anti-inflammatory and anti-oxidant compounds which have anecdotal evidence of benefit in bladder disorders (see http://www.cystaq.com/view.htm for a full list of ingredients). By coincidence, our first study with Cysta-Q has just been published, so I can share the data in full now. Here is the abstract from "Treatment of Interstitial Cystitis with a Quercetin Supplement (Cysta-Q). Katske F, Shoskes DA, Sender M, Poliakin R, Gagliano K, Rajfer J. Techniques in Urology 7(1):44-46, March 2001":
Objectives: Interstitial cystitis (IC) is a disorder of unknown etiology with few effective therapies. Oral bioflavonoid therapy utilizing quercetin has recently proven to be clinically effective in men with chronic pelvic pain syndrome, a disorder with similarities to IC. We therefore tested in an open-label trial a quercetin based supplement in patients with clinically proven IC.
Methods: Twenty-two patients with classically documented IC (3 men, 19 women) received 1 capsule of Cysta-Q (equivalent to 500 mg of quercetin) twice a day for 4 weeks. Symptoms were assessed before and after therapy by both the IC problem index and symptom index as well as a global assessment of pain (range 0-10).
Results: Average age of the patients was 53.1 years. Four patients did not complete the study. In the remaining 17 patients (81%), improvement was seen in all three parameters tested. The mean problem index improved from 11.2 +/- 0.7 to 4.8 +/- 0.7 (p=0.000003), the mean symptom index improved from 11.6 +/- 1.1 to 4.4 +/- 0.5 (p=0.00005) and the mean global assessment score improved from 8.3 +/- 0.5 to 3.3 +/- .5 (p=0.000006). None of the patients experienced any negative side effects and every patient but 1 had at least some improvement in every outcome measure.
Conclusion: Oral therapy with the quercetin supplement Cysta-Q was well tolerated and provided significant symptomatic improvement in patients with IC. Larger randomized, placebo controlled trials appear warranted based upon these preliminary open label results.
There were no side effects or adverse reactions in the study. The obvious next step is to perform a much larger double blind, placebo controlled trial and that study is currently ongoing. In the meantime, I have used "open label" Cysta-Q in a number of women with IC with excellent results.
In terms of interactions with other drugs, the only theoretical risk is the combination of Cysta-Q with the quinolone antibiotics (Cipro, Levaquin, Floxin, Tequin). Cysta-Q may prevent these antibiotics from binding properly to bacteria. The other concern is for pregnant women. It is known that antioxidants like quercetin at very high doses can actually begin to function as pro-oxidants and cause tissue damage. A Japanese study has shown that levels of quercetin in newborns are several times higher than in their mothers. Therefore, the use of Cysta-Q during pregnancy should be avoided.
Otherwise, I know of patients who have safely combined Cysta-Q with Elavil, Atarax or Elmiron without ill effects. Information on how I now use Cysta-Q in my practice is available at http://www.dshoskes.com/cystaq.html
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(icnmgrjill) Dr. Shoskes... riveting work to say the least. It's good to know that there are researchers who are finding new ways to help IC patients.
(drshoskes) We need new avenues, because not all patients are helped with what is out there.
(icnmgrjill) We have our first question from Don. He says "I've taken quercetin for 90 days with no improvement.. Should I have taken it longer?
(drshoskes) First of all, was this generic quercetin or Cysta-Q? If it was generic quercetin, there are 2 potential issues. One is that nutritional supplements are not under the control of the FDA and when consumer watchdog groups have analyzed the contents of over the counter supplements and vitamins, typically fewer than 30% actually have in them what they say the should have.
(drshoskes) The other issue is that quercetin is very poorly absorbed in the body. That is why we also use bromelain and papain which have been proven to increase the absorption through the small intestine. As I mentioned in the presentation, I had very limited success with generic quercetin in IC before testing Cysta-Q.
(icnmgrjill) I received an email from someone today who asked a very similar question... which is why can't they just go buy the cheaper, generic quercetin... and you answered that very well.
(drshoskes) Having said that, we have found that some patients do need 3 months of therapy to have an effect (although most have an effect much sooner) and therefore if there is NO benefit with Cysta-Q after 3 months, I don't think it is likely to help.
(icnmgrjill) The next question is from Dede. She asks "Do you find that quercetin helps more with pain or frequency/urgency?"
(drshoskes) If the frequency/urgency are due to the pain, then all seem to be helped together. If the frequency is from uninhibited bladder contractions, then it would not be helped as much and combination with other agents such as Detrol or Elavil may be necessary.
(icnmgrjill) I'm going to combine several questions here. In reading the ingredients for Cysta-Q, there are several herbs that people have asked about.. particularly the cranberry. Why is cranberry in Cysta-Q? Isn't it acidic? Won't it hurt the bladder? Icers are taught to stay away from cranberry.
(drshoskes) It is important to differentiate between cranberry JUICE which is very acidic and can make IC worse, and cranberry extract, which is a powerful antioxidant. In all our studies, we have not found Cysta-Q to directly worsen the symptoms of patients, which I would expect to happen if it did indeed acidify the urine.
(icnmgrjill) Donna asks... "she's been previously sensitive to Valerian.. which is also present in Cysta-Q... and that it caused her some grogginess. She asks if that could also occur if she tries Cysta-Q?
(drshoskes) The valerian root is in very small quantities. We have not seen any drowsiness reported with the product.
(icnmgrjill) Can you tell us a little about the current Cysta-Q study going on? I understand that it's supposed to end in three months.
(drshoskes) We are doing a double blind, placebo controlled trial which is the only way to conclusively prove benefit of the product. We are also collecting urine samples before and after therapy to look for different markers associated with IC. I am also working with colleagues who have an animal model of IC and we are looking at the effects of Cysta-Q.
(icnmgrjill) Sue Says.. I don't understand about the cranberry.. I thought all cranberry was acid in any form that it comes in.
(drshoskes) In the amounts that are contained in the Cysta-Q, we just haven't seen urine acidification or worsening of symptoms.
(icnmgrjill) Dr. Shoskes.. we also wanted to congratulate you on your new position in Florida as the head of the Department of Transplantation at the Cleveland Clinic. Does having IC exclude someone from being a kidney donor?
(drshoskes) Not unless they also have a high pressure bladder with kidney damage. Most IC patients could certainly donate a kidney.
(icnmgrjill) Our next question is about conservative therapies. Some doctors prefer to use oral medications before they try invasive treatments like DMSO. Where are you positioning Cysta-Q in a treatment model?
(drshoskes) I think it depends upon the severity and type of symptoms. The advantage of Cysta-Q as first line therapy is the lack of side effects and relatively rapid results, at least compared with Elmiron. For patients with severe voiding dysfunction, I would certainly consider adding Elavil +/- Atarax. Most patients I see have already failed intravesical therapy, but that certainly is also a good first line option.
(icnmgrjill) Is this a drug like Elmiron that would have to be taken daily... for the rest of our lives.. or would you see an end time?
(drshoskes) We don't really have sufficient long term experience with the therapy. Certainly some patients have stopped Cysta-Q, particularly after dealing with a bad flare, and they are fine. Many patients, though, have suffered for a very long time and have relief with Cysta-Q are very hesitant to stop taking it, so we don't really have data for months to years out.
(icnmgrjill) Are there researchers in other countries also working with Cysta-Q? Is it available in other countries yet?
(drshoskes) A colleague of mine in Canada is working with it, but no studies are being done elsewhere. I know that Farr labs is shipping Prosta-Q to many different countries in the world and am sure that they could do the same for Cysta-Q. The best approach would be to ask them.
(icnmgrjill) Here's a question from a man. He says "I have been diagnosed with both IC and prostatitis. Should I try ProstaQ or Cysta-Q? What's the difference between the two?"
(drshoskes) I would lean towards Prosta-Q, because it also contains the Saw Palmetto and Zinc which some have found helpful in prostate diseases. Clearly women don't need the Saw palmetto.
(icnmgrjill) Connie asks "How long can you take atarax? I take 5mg at night. Can I do this on a long term basis for IC?"
(drshoskes) In general, antihistamines such as Atarax are safe to take on a long term basis.
(icnmgrjill) Last question... What are your thoughts on the future of IC research? Do you feel that we're closer to a cure?
(drshoskes) Well, there has been much exciting research lately on etiology. I think that as we understand the cause and pathophysiology better, it will be easier to design specific therapies. In the meantime, we can rely on therapies that we know have clinical effectiveness, even if we don't fully understand how they work in this disease.
(icnmgrjill) Last last question. Can someone with IBS take Cysta-Q??
(drshoskes) Yes, it should not be a problem. Bioflavonoids may even show some benefit in IBS.
Dr. Shoske's Contact Information:
Daniel Shoskes, MD
Cleveland Clinic of Florida
3000 West Cypress Creek Cr. Rd.
Fort Lauderdale, FL
Appt. Phone: (954)978-5814
Books & Resources That You can Purchase:
Further information on CystaQ is available at: http://www.cystaq.com.
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $14.95/$12.00 for ICN Subscribers
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