CAFÉ ICA, VOLUME 8, NUMBER 7, July 2008

Your monthly electronic source for the latest interstitial cystitis medical highlights, self-help & coping strategies, and ICA news, brought to you by the Interstitial Cystitis Association since August 2001.

Thank you to our sponsors who provided educational grants in support of this issue of Cafe ICA!

Alaven Pharmaceutical Astra Tech Farr Labs Medtronic Foundation Uroplasty

CAFE ICA, VOLUME 8, NUMBER 7, July 2008

In this issue...

1. Hot Off the Press
1.1 Join Us in Oklahoma! Register Now for the ICA Regional Forum / Tulsa!
1.2 Physical Therapy Provides Significant Relief for Painful Bladder Syndrome
1.3 NOW RECRUITING: New Research Study for Painful Bladder Syndrome and Urinary Symptoms Associated with IC
1.4 Attention Researchers! Fishbein IC Research Grant Deadline Approaching

2. Voices in the IC Community
2.1 Star Named Director of Kidney, Urologic, and Hematologic Research
2.2 IC Coverage Reaches Far and Wide
2.3 Confident Choices IC Diet Book Now Available!

3. News YOU Can Use!
3.1 New Oral Fibromyalgia Medication Receives FDA Approval—Read about the special considerations for people with IC
3.2 All Things Diet (and IC)
3.3 New Medical Device for Pain Receives FDA Approval
3.4 ICA Call to Action!
3.5 The 2008 ICA Pilot Research Program Deadline: September 15

4. The Latest IC Research Highlights

5. Upcoming Conferences

6. Products That Can Help YOU Today!

From the ICA Mailroom:
I would like to thank you and your organization for the information and direction that you have given to me. I'm so glad that I found you on the net. -Richard

 1.0 Hot Off the Press

 1.1 Join Us in Oklahoma! Register Now for the ICA Regional Forum / Tulsa!

What: ICA Regional Forum / Tulsa

When: Saturday, August 9, 2008

Where: Doubletree Hotel Tulsa at Warren Place

Guest Speakers:

John Forrest, MD, prominent IC clinician and researcher with a strong patient following.

Saundra Seidel, APRN-BC, recently featured in the ICA Update magazine — a nationally recognized IC educator.

This Program will include:

- Presentations by Dr. Forrest and Ms. Seidel
- Networking with other IC patients
- Question & answer session
- ICA publications & IC-friendly refreshments

Registration begins at 12 noon. The program runs from 1 pm to 5 pm and includes talks by the guest speakers followed by audience Q & A.

Registration fee:
ICA Member $25.00 per person
Nonmember $35.00 per person

Now offering a new member discount!
Join the ICA today and pay member registration fee: $25 per person registration fee plus $45 ICA membership.

ICA members receive the ICA Update magazine, as well as discounts on ICA resources, educational materials, and events.

To register today please click here or call toll-free at 1-800-HELP ICA (1-800-435-7422).

 1.2 Physical Therapy Provides Significant Relief for Painful Bladder Syndrome

Interstitial cystitis (IC), also known as painful bladder syndrome (PBS), was the topic of the Interstitial Cystitis Association (ICA) Regional Forum in Tampa, Florida, on Sunday, July 13.

The paucity of information on IC drew more than 115 attendees from across the country. One patient traveled from Ecuador to hear internationally-known IC expert, Robert Evans, MD, discuss IC etiology theories, diagnostic techniques, treatments, and self-help measures. Tampa-based physical therapist, Molly Miller, MS, PT, highlighted helpful exercises and emphasized the importance of working with a physical therapist who understands IC. Ms. Miller noted that Kegel exercises, often recommended to strengthen pelvic muscles, can worsen IC pain. Dr. Evans and Ms. Miller concurred that treating underlying pelvic floor dysfunction in people with IC can yield positive results and provide significant pain relief.

Click here to read the ICA Tampa Regional Forum press release in its entirety.

 1.3 NOW RECRUITING: New Research Study for Painful Bladder Syndrome and Urinary Symptoms Associated with IC

Study underway at multiple sites in the United States to determine if investigational medication is effective in the treatment of pain associated with Interstitial Cystitis / Painful Bladder Syndrome (IC/PBS).

There is a medical need to address men and women suffering with IC/PBS pain. An investigational medication, thought to help modulate pain responses, especially in chronic pain conditions is now being assessed in clinical trials. The aim of this study is to determine whether men or women who have IC/PBS will benefit from treatment following a single IV dose of investigational medication compared to placebo. Patients will participate in the trial for approximately 18 weeks.

Approximately 25 clinical research sites across the United States are currently looking for men and women at least 18 years of age who have been diagnosed with IC/PBS. If you know someone who is suffering from the pain associated with interstitial cystitis, please share this information about participating in the research study.

This research study is now taking place at the following sites listed below. If you would wish to participate and live within reasonable traveling distance, please contact the site nearest to you for further information. You are under no obligation to participate.

Arizona
Peoria: Dr. Taber (Tel: 623 815 9714)

California
Fresno: Dr. Julian (Tel: 559 321 2841)
San Diego: Dr. Rochester (Tel: 619 299 6500)

Colorado
Boulder: Dr. Huff (Tel: 303 440 3239)

Connecticut
Middlebury: Dr. Antoci (Tel: 203 754 3588)
New Britain: Dr. Wurzel (Tel: 860 826 4453)
New London: Dr. Spitz (Tel: 860 443 4567)

Georgia
Atlanta: Dr. Riesenberg (Tel: 404 532 6828)

Indiana
Jeffersonville: Dr. Bailen (Tel: 812 206 8164)

Louisiana
Shreveport: Dr. Cline (Tel: 318 683 0411)

Maryland
Owings Mills: Dr. Gordon (Tel: 410 581 1600)

Michigan
Troy: Dr. Gudziak (Tel: 248 786 0467)

Nebraska
Omaha: Dr. Deeths (Tel: 402 934 0044)

New York
New Hyde Park: Dr. Moldwin (Tel: 516 734 8515)
Rochester: Dr. Mayer (Tel: 585 275 0989)

North Carolina
Greensboro: Dr. Evans (Tel: 336 232 5322)

Ohio
Cincinnati: Dr. Monnig (Tel: 513 366 3412)

Oklahoma
Bethany: Dr. Parkhurst (Tel: 405 709 4591)

Pennsylvania
Pittsburgh: Dr. Chermansky (Tel: 412 246 2458)

South Carolina
Greer: Dr. Whitlock (Tel: 864 968 9060)

Texas
Houston: Dr. Mobley (Tel: 713 357 0554)

Washington
Mountlake Terrace: Dr. Jacoby (Tel: 425 275 0680)
Spokane: Dr. Oskin (Tel: 509 444 7665)

Click here to find out more about this study.

 1.4 Attention Researchers!

The 2008 Fishbein Family IC Research Foundation
Grant application deadline is:

September 15

The Fishbein Family IC Research Foundation focuses research efforts in the following areas of inquiry:

GENETICS OF IC
IMMUNOLOGY OF IC
NOVEL THERAPIES FOR IC
TREATMENT OF IC PAIN

Suitable applicants are specialists with a particular interest in IC in the areas of urology, urogynecology, immunology, or pain management.

This year there is a special interest in investigating the overlap between interstitial cystitis and the vulvar pain syndromes.

The Interstitial Cystitis Association (ICA) administers the Fishbein Family IC Research Foundation grant program.

Fishbein Family IC Research Foundation research projects are normally funded for one year, and average between $10,000 and $30,000.

To apply for a Fishbein Family IC Research Foundation grant visit http://www.ichelp.org/Newsroom/ICAPublications/CafeICA/CafeICAVolume8Number7July2008/tabid/389/www.ichelp.org and click on RESEARCH CENTER.

 2.0 Voices in the IC Community

 2.1 Star Named Director of Kidney, Urologic, and Hematologic Research

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Director Griffin P. Rodgers, MD, MACP, has named Robert A. Star, MD, director of the Division of Kidney, Urologic, and Hematologic Diseases (KUH). Star, who has been acting director of the extramural research division since September 2006, oversees a $400 million grants and contracts program.

Click here to read full press release.

 2.2 IC Receives Coverage Far and Wide

The Spartanburg, South Carolina Herald-Journal and The Irish Times based out of Dublin, Ireland, both focused on IC in recent feature articles.

Elizabeth Bozeman, MD, who treats people with IC at The Urology Center in Spartansburg, SC, is featured in the article along with Karen Fann, a nurse with a milder case of IC, and Rhonda Greenway, who has the Hunner’s ulcer form of the disease.

To read the article in its entirety, please click here.

The July 29 print and online editions of The Irish Times features a question and answer column that talks about IC entitled Check-up with Marion Kerr.

To read the article in its entirety, please click here.

 2.3 Confident Choices IC Diet Book Now Available!

Confident Choices: Customizing the Interstitial Cystitis Diet, by Julie Beyer, RD.

Confident Choices: Customizing the Interstitial Cystitis Diet was written by registered dietitian and Café ICA featured columnist Julie Beyer, who understands about the challenges of living with interstitial cystitis.

- This easy-to-use 147 page, spiral-bound workbook can help you determine your personal food triggers and get you on your way to feeling better.

- Bonus sections include information on nutrition supplements, food intake and voiding diaries, and planning sheets.

- Confident Choices also includes information on exercise, stress management, emotional issues, and provides motivational success stories.

To order your copies today, please click here.

3.0 News YOU Can Use!

 3.1 New Oral Fibromyalgia Medication Receives FDA Approval—Read about the special considerations for people with IC

In early July, Eli-Lilly announced that it received FDA approval for the use of the oral antidepressant Cymbalta (duloxetine) in treating fibromyalgia. Cymbalta belongs to a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors) and is already FDA-approved for use in depression, generalized anxiety disorder, and diabetic neuropathy.

This is the second drug to be approved to treat fibromyalgia in just over a year, which is good news for those with IC who also have fibromyalgia, which is known to co-exist with IC. Pfizer’s Lyrica (pregabalin), an anticonvulsant which was the first-ever medication approved for use in fibromyalgia, received FDA approval in June of 2007.

For some people with IC, Cymbalta may cause urinary retention. In fact, it is approved in Europe to treat stress urinary incontinence in women (under the trade-name Yentreve), although at much higher doses than those recommended for fibromyalgia. For those who find this drug helpful for their IC and/or fibromyalgia, lower doses may help avoid any urinary side effects.

For more information on Cymbalta, please click here.

For more information on Lyrica, please click here.

 3.2 All Things Diet (and IC)

IC Diet Tips!

Are you incorporating the IC Diet into your lifestyle but still finding that you are flaring? You may want to take a very close look several of these potentially problematic substances:

- Are you taking a new prescription medication? Many prescription medications, such as high blood pressure medications, have been known to cause IC symptoms to flare.

- Are you taking any over-the-counter (OTC) medications? OTC medications can contain ingredients that are known bladder irritants, such as ephedrine and pseudoephedrine, which are found in many cold and sinus preparations.

- Are you taking vitamin, or mineral or herbal supplements, including multivitamins?

- Did you know that people with IC have been known to have flares in symptoms from the various dyes and binders used in many medications? If you think these may be your problem, you may want to look for dye-free products and/or use a compounding pharmacy to customize your medications for you.

- Are you trying one of the many diet/weight loss products that are currently on the market? These could be the culprit.

- Take a careful look at what you are drinking. Carbonation (sodas), acidity (including citric acid in juices and juice drinks and tannic acid in teas), caffeine, alcohol, and even vitamins that are routinely added to beverages can cause bladder irritation.

- Are you using any type of artificial sweetener? Artificial sweeteners may cause bladder irritation.  An alternative to these products is stevia, which is an all-natural sweetener touted as being 10 times sweeter than sugar. It is derived from the stevia plant (stevia rebaudiana bertoni) and is available at healthfood stores and many supermarkets.

- Are you eating a lot of processed, packaged foods, such as macaroni and cheese or frozen, pre-prepared meals such as Lean Cuisine? These can contain preservatives and other ingredients that could be causing your IC symptoms to flare.

Become a diligent LABEL READER! Typically, the more ingredients listed, the more chances there are that the product could cause you problems. If buying pre-prepared foods, stick with the least amount of ingredients and make sure that they are all considered safe to try on the IC Diet.

With a bit of keen detective work you may be able to target your own ingredient culprits that may be hindering your success while following an IC-friendly diet!

 3.3 New Medical Device for Pain Receives FDA Approval

Advanced Neuromodulation Systems (ANS), a division of St. Jude Medical, Inc., recently announced US and European approvals of the Eon Mini, the world's smallest, longest-lasting rechargeable neurostimulator to treat chronic pain of the trunk or limbs and pain from failed back surgery. It should be available in both the US and Europe in late 2008.

The Eon Mini has the longest-lasting battery life of any rechargeable spinal cord stimulation (SCS) device in its class. It is the only small rechargeable neurostimulator to receive a 10-year battery longevity approval by the FDA. While not approved specifically for interstitial cystitis, neuromodulation devices such as this have been tried and tested in people with IC with varying degrees of success.

Visit these sites to learn more about the Eon Mini:
http://www.poweroveryourpain.com/sb/index.html
http://www.sjm.com/devices/device.aspx?name=Eon Rechargeable IPG System&location=us&type=43

 3.4 ICA Call to Action!

The National Vulvodynia Association was recently contacted by a woman who is writing a book on vulvodynia and other vulvar pain disorders. She is interested in including patient stories in the book.

If you are interested in sharing your history with her (can remain anonymous), please send an email to Stacie Vaughn at vpain_research@hotmail.com, summarizing the following:

- when your symptoms began
- a description of your symptoms
- a summary of treatments you've tried and how effective they've been

THANK YOU!

From the ICA Mailroom:

Thank you so much for the information. I have found it to be very helpful and informative. I really do appreciate your time and effort. I am studying to be a Women's Health Nurse Practitioner so this information will be very beneficial to me as well as my future patients. Again, thank you. -R. Jackson

 4.0 The Latest IC Research Highlights

Newly Discovered Receptor Shows Potential as Bladder Pain Target
Lashinger ES, Steiginga MS, Hieble JP, Leon LA, Gardner SD, Nagilla R, Davenport EA, Hoffman BE, Laping NJ, Su X. AMTB, a TRPM8 Channel Blocker: Evidence in Rats for Activity in Overactive Bladder and Painful Bladder Syndrome. Am J Physiol Renal Physiol. 2008 Jun 18. [Epub ahead of print]

Earlier this year, Japanese researchers discovered that a single receptor TRPM8, is likely responsible for all cold sensation. That shows potential for activating the pain reducing properties of cold and also blocking pain sensations (which can be like those resulting from extreme cold). Now, investigators at GlaxoSmithKline are studying the receptor’s potential as a drug target for overactive bladder and bladder pain. They used a blocker, known as AMTB, of the TRPM8 channel to see if it changed the animals’ reactions to bladder filling and found that it did reduce both voiding reflexes and pain reflexes.

New Target for IC, Overactive Bladder Drug Therapy Shows Potential
Su X, Leon LA, Wu CW, Morrow DM, Jaworski JP, Hieble JP, Lashinger ES, Jin J, Edwards RM, Laping NJ. Modulation of Bladder Function by Prostaglandin EP3 Receptors In the Central Nervous System. Am J Physiol Renal Physiol. 2008 Jul 16. [Epub ahead of print]

Researchers at GlaxoSmithKline are focusing on another receptor that may be a target for overactive bladder or IC drugs, the prostaglandin EP3 receptor in the central nervous system. These receptors, when triggered, may excite bladder activity. They administered two EP3 blockers, called DG041 and CM9, in both the abdominal cavity and the brain in experimental animals to assess the reaction of the bladder to being distended. Both compounds showed high affinity for the receptors, and both blocked the cellular activity induced by a compound that excites that receptor. The compounds administered both ways reduced the frequency of bladder contractions but not their strength, but administering the compounds in the body cavity produced strong, long-lasting effects, whereas administration in the brain produced only transient effects. That means, said the investigators, that these EP3 receptors are involved in urination at spinal and supraspinal centers and in sensation of bladder pain at the spinal cord level. Some EP3 receptor blocker may help control bladder overactivity and pain, they concluded.

Drug Development Programs Take Aim at “Hot Pepper” Receptor
Messeguer A, Planells-Cases R, Ferrer-Montiel A. Physiology and pharmacology of the vanilloid receptor. Curr Neuropharmacol. 2006 Jan;4(1):1-15.

This article reviews research on vanilloid receptor 1, the “hot pepper receptor,” and discusses the great potential for drugs that target it. Interestingly, this receptor is made very active by inflammatory agents, which is thought to be part of the process of sensitizing pain receptors leading to oversensitivity to heat. The research is building a strong case that this receptor is involved in both outer-body and internal organ inflammatory pain, such as inflammatory bowel disease, bladder inflammation, and cancer pain. Drug development programs aimed at this receptor are intensive. The challenge will be to develop receptor blockers that correct overactivity while still allowing normal pain and sensation, said the authors.

ATP Receptor Is Also Target for Bladder Pain Drug Development
Brederson JD, Jarvis MF. Homomeric and heteromeric P2X3 receptors in peripheral sensory neurons. Curr Opin Investig Drugs. 2008 Jul;9(7):716-25.

These neuroscience researchers at Abbott Laboratories detail what is known about the receptors for ATP and their role in pain, especially bladder pain. One of them, the P2X3 receptor, is very common in the bladder, which is rich in neurons containing this receptor. When ATP or similar compounds attach to the receptor, nerves are more sensitive to noxious stimulation. In animal research, blocking this receptor fully blocked certain types of chronic inflammatory and neuropathic pain. This receptor will be an important target for drugs for chronic pain including bladder pain.

Researchers Look at Drug Target for Pain Hypersensitivity, Bladder Pain
Robbins MT, Ness TJ. Footshock-Induced Urinary Bladder Hypersensitivity: Role of Spinal Corticotropin-Releasing Factor Receptors. J Pain. 2008 Jul 15. [Epub ahead of print]

Receptors for corticotropin-releasing factor (CRF) might be a good target for drugs to ease bladder pain. Because hypersensitivity to pain is thought to play a role in bladder pain and because it is known to be brought on by stress, the investigators looked at ways to block that response in stressed rats. When stressed (by footshock), the rats’ bladders became hypersensitive. The researchers found that blocking the CRF(2) receptor, but not the CRF (1) receptor calmed the response to bladder distention. They administered a CRF(2)-like compound, urocortin 2, to the spine, which increased the response in a way that was similar to stress. The effect was significantly calmed by pretreating the animals with spinal aSVG30, a CRF(2) receptor blocker. Neither CRF nor the CRF(1) receptor blocker antalarmin had any effect on the bladder responses. The study supports the role of stress in making bladder pain worse and also implicates spinal urocortins and their receptor, CRF(2), as players in this process. This could ultimately lead to more effective treatments for IC pain as well as chronic pain that is worsened by stress, said the investigators.

Uterus-Urethral Cross Sensitization May Play Pain Role, Too
Peng HY, Chang HM, Chang SY, Tung KC, Lee SD, Chou D, Lai CY, Chiu CH, Chen GD, Lin TB. TRPV1 mediates the uterine capsaicin-induced NMDA NR2B-dependent cross-organ reflex sensitization in anesthetized rats. Am J Physiol Renal Physiol. 2008 Jul 16. [Epub ahead of print]

Cross-organ sensitization has been a hot topic in basic IC research, mainly that between colon and bladder. These physiologists, however, are looking at pathways between the uterus and bladder. They tested the idea that exciting the “hot pepper” sensitive nerves from the uterus would sensitize the lower urinary tract. Capsaicin instilled into the uterus of experimental animals sensitized pelvic and urethra reflex activity. That was prevented by pretreating the uterus with capsazepine, which blocks the “hot pepper” (TRPV1) receptor. In addition, administering an NMDA and a selective NMDA NR2B blocker also thwarted the cross-organ reflex sensitization. These results show that TRPV1 plays a crucial role in the mediating the glutamatergic NMDA-dependent cross-organ sensitization between the uterus and lower urinary tract, said the authors.

Destructive Enzyme Levels High in IC Urine
Kuromitsu S, Yokota H, Hiramoto M, Morita S, Mita H, Yamada T. Increased concentration of neutrophil elastase in urine from patients with interstitial cystitis. Scand J Urol Nephrol. 2008 Apr 30:1-7. [Epub ahead of print]

Researchers at Astellas Pharma in Japan used proteomics—a way to study protein profiles—to find proteins that might be typical of IC. They focused on one, neutrophil elastase. This enzyme is produced by white blood cells known as neutrophils, which play a role in combatting infection and produce various compounds that attack bacteria, such as this enzyme. When the body cannot regulate it, this destructive enzyme can destroy tissue, playing a role in such diseases as emphysema and cystic fibrosis. Concentrations of this enzyme were significantly higher in IC patients with pain than in healthy people. It was also higher in patients with small bladder capacity. Levels didn’t have any relationship with the actual numbers of neutrophils that appeared in IC patients’ urine.

Understanding Cell Signaling Could Lead to New Treatments
Keay S. Cell signaling in interstitial cystitis/painful bladder syndrome. Cell Signal. 2008 Jun 19. [Epub ahead of print]

This review article by the discoverer of antiproliferative factor (APF) as a potential urine marker of IC describes what we know so far about cell-signaling abnormalities in IC/painful bladder syndrome (PBS) patients. They are known to have abnormal levels of various inflammatory compounds and growth factors, along with abnormal expression of markers of cell growth and maturation in epithelial cells, growth factors, cell membrane proteins, nerve transmitters, and other inflammatory compounds in their tissue. APF can induce some of these abnormalities in normal bladder lining cells by binding to a particular receptor. Understanding these processes better could lead to development of more effective therapies.

Osteopathic Technique Eases Pelvic Pain
Grimaldi M. Painful perineum in all its forms. Contribution of manual medicine and osteopathy. Clinical study. [Article in French] J Gynecol Obstet Biol Reprod (Paris). 2008 Jul 7. [Epub ahead of print]

This osteopathic gynecologist and colleagues used “manual medicine” to help treat pelvic pain, such as painful intercourse, vulvodynia, and coccygodynia, which, the author said, can be brought on by a bone and myofascial disorder. Six patients at this center and 86 others at other centers worldwide were treated, with 71 having satisfactory results after two sessions. The encouraging results to be confirmed on a larger scale to establish an appropriate teaching protocol, noted the author.

GAG Replacer Instillation Helps Increase Bladder Capacity
Daha LK, Riedl CR, Lazar D, Simak R, Pfluger H. Effect of intravesical glycosaminoglycan substitution therapy on bladder pain syndrome/interstitial cystitis, bladder capacity and potassium sensitivity. Scand J Urol Nephrol. 2008 Jan 8:1-4. [Epub ahead of print]

At this Austrian clinic, urologists gave 27 patients GAG-replacing instillations weekly for 10 weeks. They used a modified potassium sensitivity test after instillation of the therapy to help assess response. In the 13 patients who did respond, maximum bladder capacity doubled with potassium instillation compared with their previous response to it. Their capacity in response to saline instillation increased 17 percent. The others had their capacity decrease by 35 percent with a saline solution and experienced no change in response to the potassium solution.

Behavioral Therapy May Improve Sexual Function
Breton A, Miller CM, Fisher K. Enhancing the sexual function of women living with chronic pain: A cognitive-behavioural treatment group. Pain Res Manag. 2008 May-Jun;13(3):219-24.

Women with chronic pain who attended a group cognitive behavioral therapy program showed improvement in sexual function, despite no change in pain levels during penetration or change in fatigue levels. The group therapy was led by a psychologist and physical therapist. This was a qualitative and not a controlled study. The authors said that the results suggest that a “cognitive shift,” communication, and partner involvement may be the reasons for improvement.

Cost of IC is High, Especially for Patients Getting Strong Pain Control
Stanford EJ, Chen A, Wan GJ, Lunacsek OE, Sand PK. Treatment modalities, health care resource utilization, and costs in patients diagnosed with interstitial cystitis. Am J Obstet Gynecol. 2008 Jul;199(1):71.e1-10.

These pelvic surgeons did an analysis of a managed care claims database and found that healthcare costs were higher for IC patients who were treated with narcotics plus nonnarcotic analgesics than those who were treated with more common oral medications for IC, such as pentosan polysulfate (Elmiron), amitriptyline (Elavil), and hydroxyzine (Atarax). Physician visits were fewest among patients treated with Elmiron, amitriptyline, and hydroxyzine. Patients who got treated with DMSO plus cystoscopy or bladder irrigation or narcotics plus nonnarcotic analgesics had more physician visits than others. These results might imply that management is more efficient with the oral drugs, but it might also imply that patients who have more pain and need more pain-oriented therapy have worse conditions and need more care.

When Elmiron Controls Symptoms, Patients Are Satisfied with Treatment
Sand PK, Kaufman DM, Evans RJ, Zhang HF, Fisher DL, Nickel JC. Association between response to pentosan polysulfate sodium therapy for interstitial cystitis and patient questionnaire-based treatment satisfaction. Curr Med Res Opin. 2008 Jun 25. [Epub ahead of print]

This study showed that patients who got good symptom control (a reduction of 30 percent or more) with pentosan polysulfate (Elmiron) were more satisfied with their treatment.

Review Educates Family Practitioners about Pelvic Pain
Ortiz DD. Chronic pelvic pain in women. Am Fam Physician. 2008 Jun 1;77(11):1535-42.

This review article in a major journal for family practice physicians describes chronic pelvic pain conditions, including IC; their diagnosis; and treatment. In most cases, said the authors, a specific diagnosis isn’t found, but laboratory analysis and ultrasound can help clarify the diagnosis and rule out serious disease. The abstract mentions trigger point and botulinum toxin A (Botox) injections and neuromodulation.

French Language Review Educates Urologists
Mouracade P, Saussine C. Interstitial cystitis in 2008. [Article in French] Prog Urol. 2008 Jul;18(7):418-25. Epub 2008 May 27.

This review article for French-speaking urologists describes IC and points out that delays in diagnosis are often long, in part because IC is not as widely recognized as it should be and in part because the symptoms are not very specific and there is no diagnostic test as yet. Because of the variations in how IC is defined, it has been difficult to do epidemiologic studies. Nevertheless, the true prevalence of IC is greater than previously thought.

Effectiveness of RTX Still Not Known
Mourtzoukou EG, Iavazzo C, Falagas ME. Resiniferatoxin in the treatment of interstitial cystitis: a systematic review. Int Urogynecol J Pelvic Floor Dysfunct. 2008 Jun 19. [Epub ahead of print]

Studies on resiniferatoxin (RTX) treatment for IC show conflicting results. Of the six published studies, the largest study showed no improvement of overall symptoms after one treatment. Smaller studies of one RTX treatment gave conflicting results. Two studies that looked at multiple or prolonged treatment yielded more encouraging results. The effectiveness of the therapy remains unknown.

ICA Resources!

Confident Choices: Customizing the Interstitial Cystitis Diet, by Julie Beyer, RD.

This easy-to-use spiral-bound workbook, written by registered dietitian Julie Beyer, can help you identify your personal food triggers. Provides information on supplements, food intake, voiding diaries, and planning sheets, as well as exercise and stress management.

BKCON05

Member Price: $17.00

Non Member price: $20.00

CLICK HERE TO ORDER NOW!

Pilates DVD!

New Dawn Pilates Vol. 1

Finally, a Pilates exercise DVD created especially for those suffering with chronic pelvic pain! This is a viewer-customizable, daily workout plan that can be tailored to each individual's different exercise and pain levels.

VIPIL08

Member Price: $27.99

Non Member price: $29.99

CLICK HERE TO ORDER NOW!

New Forum Transcripts!
2007 ICA Forum Transcripts Now Available

Los Angeles Regional IC Forum Transcript

IC: The Basics and Beyond, presented by Robert Moldwin, MD

20 pages of state-of-the-art IC information

Dr. Moldwin is Associate Professor of Clinical Urology and Director of the Urological Pelvic Pain Center at the Smith Institute for Urology, Long Island Jewish Medical Center (LIJMC), in New Hyde Park, NY. A member of the ICA’s Medical Advisory Board for many years, he wrote the best-selling patient-oriented book entitled The Interstitial Cystitis Survival Guide (New Harbinger Publications), which is available for purchase through the ICA.

TRLA07

Member Price: $10.00

Non Member Price: $15.00

CLICK HERE TO ORDER NOW!

Detroit Regional IC Forum Transcript

IC: Where Are We Now? Where Are We Going? Presented by David Burks, MD, and Two Complementary Therapies for IC/PBS: Posterior Tibial Nerve Stimulation and Guided Imagery, presented by Donna Carrico, RN, CNP, MS

28 pages of IC information from TWO Detroit-area IC specialists

A member of the ICA’s Medical Advisory Board, David Burks, MD, is also on the Board of Governors of the Henry Ford Medical Group and has a very busy voiding dysfunction practice. Donna J. Carrico, RN, CNP, MS, is the Program Coordinator and a health care provider with the WISH Program (Beaumont Women’s Initiative for Pelvic Pain and Sexual Health) in Detroit. She has 25 years of experience in all areas of women’s health.

TRDET07

Member Price: $15.00

Non-Member Price: $22.50

CLICK HERE TO ORDER NOW!

ICA Regional Forum / Bethesda Two-Disk DVD Set!

This is a more than two-hour, two-disk detailed presentation on the latest IC treatments and pain management techniques featuring renowned IC experts and ICA Medical Advisory Board members Robert Moldwin, MD, and Daniel Brookoff, MD, PhD. Taped in the fall of 2006.

CLICK HERE TO ORDER NOW!

Because You Care: Being Your Own Best Advocate

Living with IC and related conditions can be a challenge. This new booklet in our Because you Care series is designed to help people with IC meet the challenges of chronic illness and find validation, comfort, and relief. We have found that it is very helpful for people with IC to become actively involved in the management of their condition and to be strong advocates for themselves. After all, no one knows as well as you do what it is like to BE you!

Topics covered include medication issues, employment issues, educational issues, insurance issues, disability issues, and three chapters focusing on navigating daily challenges in your own life.

CLICK HERE TO ORDER NOW!

The Many Faces of IC—People Living with Interstitial Cystitis: Their Stories

The ICA has brought together a collection of some of our most popular and inspiring patient stories that we have had the privilege of publishing over the past several years.

This book contains 100-plus pages of inspirational and moving profiles of people living with IC. The Many Faces of IC includes portraits of men, women, and children from a multitude of cultural, ethnic, and philosophical backgrounds.

CLICK HERE TO ORDER NOW!

Because You Care: Exploring the Unique Intimacy Issues of People with Interstitial Cystitis

Another first for the IC world from the ICA— a booklet about sexual intimacy issues and challenges written from the patient's perspective!

This one-of-a-kind booklet is written especially for people with IC and their intimate partners, offering insight into how IC affects sexuality, as well as successful coping strategies for achieving and maintaining rewarding intimate relationships while living with IC.

The 45-page Because You Care booklet focuses on the following challenges of sexual intimacy and IC: physical, psychological, emotional, social, spiritual, cultural, and other special concerns, such as medications and the concerns of men who suffer from IC.

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IC: Current Concepts—Part Two of the ICA's Video Series

This video presentation was recorded at the ICA's University of Maryland Regional IC Forum that took place at the Hyatt Regency in Arlington, VA, in September 2005. The keynote speaker was 2003 National Book Award winner, Carlos Eire, PhD, a Yale University professor who is an IC sufferer. Featured presenters included clinicians and researchers from the University of Maryland: Toby Chai, MD; Susan Keay, MD, PhD; and John Warren, MD.

The most current IC research is explained by the researchers themselves. IC: Current Concepts is designed for both IC patients and healthcare providers. The presentation is available in both DVD and VHS formats.

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ALSO AVAILABLE: For those of you who prefer reading IC presentations, we have published a written transcript of IC: Current Concepts.

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Our Pocket Guide Series Continues!

IC: Expert Opinions, Volume II

With IC: Expert Opinions, Volume II, we have assembled some of the top experts in the field of IC to explore specific topics and special concerns that people with IC often ask about. This is the fourth addition to our Pocket Guide series. Physicians included in Expert Opinions, Volume II: Robert Evans, MD; Christopher Payne, MD; Susan Keay, MD; John Warren, MD; and Kristene Whitmore, MD.

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5.0 Upcoming Conferences

  6.0 Products That Can Help YOU Today!

Reduced Acid Beverages

Minute Maid Low Acid Orange Juice: This product can be found in the frozen food section of most supermarkets, alongside Minute Maid’s other juice products. Although it is reduced in acid, some IC patients may find that they need to dilute the concentrate with more water and/or add some Prelief to lessen the possibility of flaring IC symptoms.

To find out more please visit www.minutemaid.com.

Natural Touch Kaffree Roma: Roma is a multi-grain beverage with chicory that has a full-bodied taste similar to coffee, but without caffeine or tannic acids. It can be used as a coffee or hot cocoa substitute. Roma is distributed by Worthington Foods, a division of Kellogg's, and can be found in many major supermarkets.

To find out more please visit www.wfds.com.

Teeccino:Teeccino Caffeine-free Herbal Coffee is a blend of herbs, grains, fruits, and nuts that are roasted and ground to brew and taste just like coffee. Coffee lovers are attracted to Teeccino's full-bodied, dark roasted flavor and its nutritious health benefits. Available in seven delicious flavors including Vanilla Nut, Java, Mocha, and Hazelnut. With 65 mg of natural potassium in each cup, Teeccino is alkaline and helps reduce acidity.

For more information please visit http://www.teeccino.com/.

Dietary Supplements

Cysta-Q: Farr Labs, LLC, has two formulas that are designed for people with IC and nonbacterial prostatitis: Cysta-Q and Prosta-Q. Cysta-Q is a dietary supplement that targets the urinary frequency, urgency, and pain of IC. Cysta-Q consists of a (patent-pending) extracted blend of the quercetin, bromelain, papain, cranberry powder (non-acidic), skullcap, wood betony, passionflower, and valerian. Farr Labs also distributes Prosta-Q, an over-the-counter quercetin dietary supplement that promotes and maintains prostate health.

Published findings of clinical trials have shown that both Cysta-Q and Prosta-Q significantly reduce symptoms of IC and chronic pelvic pain syndrome in men.

To find out more visit http://www.cystaq.com/ or call 1-877-284-3976.

CystoProtek: A patent-protected natural oral dietary supplement in softgel capsule form, has been clinically demonstrated to relieve symptoms associated with interstitial cystitis. The anti-inflammatory properties of the chondroitin sulfate, quercetin and rutin in CystoProtek’s unique natural formula reduce bladder damage and pain, while its glucosamine sulfate, chondroitin sulfate and hyaluronate sodium help replenish the damaged glycosaminoglycan (GAG) protective layer in the bladder.

CystoProtek’s beneficial effects in interstitial cystitis are believed to be due to this dual action. In two clinical studies, CystoProtek was well tolerated by patients and reported to be effective in reducing the pain and improving overall symptoms in many women with interstitial cystitis. To find out more about CystoProtek please visit http://www.cysto-protek.com/ or call 888-317-0001.

Desert Harvest Aloe Vera: Aloe vera is a powerful anti-inflammatory and pain reliever. Desert Harvest makes a very concentrated form of aloe vera just for IC patients. A small clinical trial of Desert Harvest whole-leaf aloe vera capsules showed significant reduction in the symptoms of IC. Desert Harvest Aloe Vera’s active ingredient is a polysaccharide, which researchers believe may form an artificial GAG layer in the bladder.

For more information and a free sample please visit www.desertharvest.com or call 1-800-222-3901.

Prelief: AkPharma, Inc. makes Prelief, a dietary supplement containing calcium glycerophosphate, has been shown to help reduce bladder pain and urinary urgency when used with acidic foods and beverages.

For more information about Prelief, please visit www.prelief.com or call (800) 994-4711.

IC-Friendly Catheters

LoFric Catheters: Astra Tech, Inc. is the maker of the LoFric hydrophilic catheters and kits for intermittent catheterization. LoFric is the only catheter in the world proven to reduce the risk of both UTIs and long-term complications. 100% latex-free. To find out more please visit http://www.lofric.com/.