Cafe ICA May 2009 ~ volume 9, number 5
IC medical highlights, self-help and coping strategies, and ICA news

Thanks to the sponsors who provided educational grants in support of this issue. Alaven Pharmaceutical LLC		Hot Off the Press IC Prevalence Figure Increases Last Chance to Take the ICA CAM Survey! OB/GYN Community Receives an IC Education ICA Call to Action: Voice Your Concerns about FDA’s Proposed REMS Policy for Pain Meds Voices in the IC Community Support Group Listings Update Runner Goes the Mile and Beyond for IC A Good IC Doctor Makes All the Difference Obama Book Includes Letter from Teen with IC Join Us at the Health and Wellness Fair News You Can Use ICA Website Updates New Quick Survey and Results of Previous One Diet Bytes Recent FDA Warnings UraCyst to be Available in Italy Research Highlights Resource Materials Upcoming Conferences Products That Can Help You
AkPharma Inc.
Farr Labs LLC

From the ICA Mailroom
When I wasn’t getting answers from the medical community, I had to seek answers myself and go with my gut.  But knowing you or someone like you was available meant so much.

I am very grateful I do not have IC.  I hurt for the many people who do.  Please keep up the search for cures and remedies.  I am mailing a $20 check.  Nancy

HOT OFF THE PRESS

IC Prevalence Figure Increases
The National Institute’s of Health (NIH)-funded RAND Interstitial Cystitis Epidemiology (RICE) study recently released its IC estimate.  This new figure -- a prevalence of 3 to 8 million women in US with IC -- is higher than most previous estimates and is thought to be a more accurate depiction of IC prevalence in US women.
Read more.

Last Chance to Take the ICA CAM Survey!
There's only one more week to complete our online survey that focuses on complementary and alternative medicine (CAM) for IC.  If you have tried any of these techniques, please take a moment to complete the survey.  Also, ask your IC friends who have tried CAM therapies to fill out the survey, too.  Nearly 2,000 of you have responded so far.  The more of you we hear from, the more we will understand what types of CAM might work for IC.  By taking the survey, you can help others with IC as well as IC researchers place this piece in the IC puzzle.
Take survey.

OB/GYN Community Receives an IC Education
The American College of Obstetricians and Gynecologists (ACOG) 57th Annual Clinical Meeting took place in Chicago in early May, and IC education was on the agenda.  The ICA conducted intercept interviews with OB/GYNS about the IC healthcare team, as well as raised awareness about IC by educating attendees one-on-one in the exhibit hall.
Read more.

ICA Call to Action: Voice Your Concerns about FDA’s Proposed REMS Policy for Pain Meds
Let your voice be heard! The Risk Evaluation and Mitigation Strategies (REMS) that the Food and Drug Administration (FDA) is proposing on pain medicines could severely limit your access to pain meds.  You have an opportunity to have your voice heard by sharing your comments about the needs of people with pain to improve quality of life and to reduce their sense of suffering.
Read more.

VOICES IN THE IC COMMUNITY

Support Group Listings Update
To find out about IC support groups near you, please visit the list of support groups by state on the ICA website.

Runner Goes the Mile and Beyond for IC
Joe Daczko, of Mantua, Ohio, recently qualified (again!) for the Boston Marathon and he became a CNN iReporter that day as well.  He is also the devoted husband of his wife Angi Daczko, who has IC, and together they are enthusiastic advocates for the ICA and all who have IC.  The Daczkos know firsthand the importance of getting the word out about IC to anyone and everyone.
Read more.

A Good IC Doctor Makes All the Difference
From time to time we hear about doctors who have made a difference in your life.  Here's an experience from Richard White, a gentleman with IC who is now doing much better because of the care of a special physician, Christopher Payne, MD, of Stanford University, a member of the ICA’s Medical Advisory Board.
Read more.

Obama Book Includes Letter from Teen with IC
Casey Mack of Connecticut, an eighth grader with IC, is featured in the newly released book Dear President Obama: Letters of Hope from Children Across America.  The book is the creation of Bruce Kluger and David Tabatsky, both New York City writers and editors (Parenting magazine, USA Today, National Public Radio, among others).
Read more.

Join Us at the Health and Wellness Fair
If you are in the Tampa area on June 4, please be sure to stop by Rasmussen College’s School of Allied Health and School of Nursing Health and Wellness Fair.  ICA Patient Advocate Linda Salin will be representing the ICA at a booth.

Date: Thursday, June 4, 2009
Time: 10 am-2 pm
Location: Rasmussen College, 2127 Grand Blvd., Holiday, FL 34690

Stop by and receive FREE information, demonstrations, and screenings in the following areas:

• blood pressure
• cholesterol
• glucose monitoring
• bloodmobile
• pharmacy
• tobacco prevention
• women's health
• massage demonstration

NEWS YOU CAN USE

ICA Website Updates
Check out the ICA's website for newly updated information on:

• Antidepressants
• Cystoscopy with Hydrodistention 
• Frequently Asked Questions: Why am I being prescribed antidepressants for my IC?

New Quick Survey and Results of Previous One
Your responses were overwhelming for our last Quick Survey -- over 700 of you participated!  The results for the last Quick Survey are listed below and tackle the subject of your absolute number one IC flare trigger.  Diet was the winner by a long-shot.  For the new Quick Survey, we are asking you the same question, but without diet as an option.  Click here now to participate!  Remember that you can always view the current Quick Survey as well as all previous Quick Surveys by going to the boxed area on the right side of the ICA’s homepage.

Previous Quick Survey results:

Diet Bytes
Registered Dietitian Julie Beyer, MA, RD, addresses IC and diet questions in this column and helps guide people with IC in the right direction and to make the right choices.

Is there any kind of low-fat salad dressing that I can have?

One of the most common questions I get from interstitial cystitis (IC) patients is, "What can I put on my salad?"  The answer is, "Plenty!"  The trick is to pile the salad itself with flavorful vegetables, herbs, IC friendly fruit, cheeses, and nuts so that you aren't relying solely on the salad dressing for that burst of flavor.
Read more.

Recent FDA Warnings

The FDA released two medicine warnings that may be of interest to you:

• Anti-seizure Meds Increase Suicide Risk and Now Requiring Warning Labels: Anti-seizure medicines are used by people with IC as well as those with fibromyalgia and other nerve-related pain conditions.  Recently, following an analysis and review of 11 of these medicines, the Food and Drug Administration (FDA) alerted physicians about the heightened risks of suicidal tendencies that has been found with these medicines and informed them that warning labels will be required on anti-seizure drugs.
• New Labeling Required for OTC Pain and Fever Medicines: The FDA is now requiring makers of over-the-counter (OTC) pain relievers and fever reducers to revise their labeling to include warnings about potential safety risks associated with these popular drugs used by many, including people with IC.  These risks include internal bleeding and liver damage.

UraCyst to be Available in Italy
Stellar Pharmaceuticals of Canada has signed a licensing agreement with Sigmar Italia, a specialty pharmaceutical sales and marketing company, for the distribution and sale of Uracyst in Italy.  Uracyst is a sodium chondroitin sulfate solution that is thought to work by replenishing the glycosaminoglycan (GAG) lining of the bladder (the protective barrier that guards the bladder against irritants and toxins in the urine).  While Uracyst is currently not FDA-approved for use in the United States, it is available in Canada and in several countries throughout Europe, and is awaiting regulatory approval in China and Israel.
Read more.

From the ICA Mailroom
You have made a difference in the last few days.  Especially when things didn't look really good.  It is hard to get the moral support I need.  This is why I decided to try the ICA for support.  I knew you would help.  Anonymous

RESEARCH HIGHLIGHTS

Every month, we update you on the latest published research on IC and help you understand what it means for you now and for treatments that could help you in the future.

Treatments/Drug Discovery

Bladder Botox Gets Closer to Prime Time
Silva CM, Cruz F. Has botulinum toxin therapy come of age: what do we know, what do we need to know, and should we use it? Curr Opin Urol. 2009 May 13. [Epub ahead of print]

Botulinum toxin A (Botox) injection therapy for the bladder and prostate is getting closer to going prime time, although for IC, it’s still in the research arena, said these authors.
Read more.

No Sexual Function Improvement from InterStim
Ingber MS, Ibrahim IA, Killinger KA, Diokno AC, Peters KM. Neuromodulation and female sexual function: does treatment for refractory voiding symptoms have an added benefit? Int Urogynecol J Pelvic Floor Dysfunct. 2009 May 14. [Epub ahead of print]

Sexual function scores didn’t improve in IC/painful bladder syndrome (PBS) patients after they got InterStim, showed this study that looked at sexual function in women who had overactive bladder or IC/PBS.
Read more.

Electroacupunture Eases Pelvic Pain
Lee SH, Lee BC. Electroacupuncture relieves pain in men with chronic prostatitis/chronic pelvic pain syndrome: three-arm randomized trial. Urology. 2009 May;73(5):1036-41.

Electroacupuncture eased symptoms and pain significantly in men with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), which may mean it has potential for IC patients, too.
Read more.

Sleep Improves when Symptoms Do
Nickel JC, Payne CK, Forrest J, Parsons CL, Wan GJ, Xiao X. The relationship among symptoms, sleep disturbances and quality of life in patients with interstitial cystitis. J Urol. 2009 Jun;181(6):2555-61. Epub 2009 Apr 16.

When symptom index scores improved, so did sleep and quality of life scores, found an analysis of a trial of pentosan polysulfate (Elmiron) for IC.
Read more.

Etiology

Immune System, Inflammatory Genes Revved Up in IC
Gamper M, Viereck V, Geissbuehler V, Eberhard J, Binder J, Moll C, Rehrauer H, Moser R. Gene expression profile of bladder tissue of patients with ulcerative interstitial cystitis. BMC Genomics. 2009 Apr 28;10(1):199. [Epub ahead of print]

IC patients with Hunner’s ulcers have some 1,000 genes that are more active than in healthy people -- in patterns that are similar to those of people with immune system, lymphatic, and autoimmune disease.
Read more.

Diagnosis/Assessment

Multichannel Urodynamics Can Be Painful
Segev Y, Rosen T, Auslender R, Dain L, Abramov Y. How painful is multichannel urodynamic testing? Int Urogynecol J Pelvic Floor Dysfunct. 2009 Apr 24. [Epub ahead of print]

Although many IC experts believe that urodynamic studies are not very helpful in IC, they are sometimes performed.
Read more.

Social Issues

No Firm Answer on Biggest Quality of Life Factors
Tripp DA, Nickel JC, Fitzgerald MP, Mayer R, Stechyson N, Hsieh A. Sexual functioning, catastrophizing, depression, and pain, as predictors of quality of life in women with interstitial cystitis/painful bladder syndrome. Urology. 2009 May;73(5):987-92.

What are the major drags on quality of life for IC patients? Previously, these researchers found sexual function to be a major factor, but not this time.  Notable in this study were how long patients had had symptoms and unemployment.
Read more.

Improving Quality of Life May Take Clinical plus Psychological Therapy
Romão AP, Gorayeb R, Romão GS, Poli-Neto OB, dos Reis FJ, Rosa-e-Silva JC, Nogueira AA. High levels of anxiety and depression have a negative effect on quality of life of women with chronic pelvic pain. Int J Clin Pract. 2009 May;63(5):707-11.

This study showed a correlation between anxiety and depression and quality of life in women with chronic pelvic pain.
Read more.

Medical Education

Helping GYNs Recognize IC
Dell JR, Mokrzycki ML, Jayne CJ. Differentiating interstitial cystitis from similar conditions commonly seen in gynecologic practice. Eur J Obstet Gynecol Reprod Biol. 2009 Apr 29. [Epub ahead of print]

This article is a lesson in how to tell IC apart from other conditions gynecologists see.  These gynecologists let their colleagues know that diagnosing IC correctly is critical for their patients’ well-being.
Read more.

RESOURCE MATERIALS

The ICA is your best source on the web for books, articles, transcripts, and other resources covering all aspects of interstitial cystitis.  To order, access the ICA Resource Materials Guide online or 800 HELP ICA (800-435-7422).

Please note that most items have two prices: member (discounts on most publications) and nonmember.  Becoming a member of the ICA will pay off in the amount you can save on the many resources offered!  For more information on joining the ICA and becoming a member click here.

UPCOMING CONFERENCES

PRODUCTS THAT CAN HELP YOU

Many types of over-the-counter (OTC) products can be helpful in relieving IC symptoms.  Local pharmacies and supermarkets sell most.  Some are only sold on the internet.  Check out the review of over-the-counter products on the ICA website.

• Supplements -- Relieve Bladder Symptoms
• OTC Drug Products -- Calm Flares
• Moisturizers & Cotton Tissues and Toilet Papers -- Sooth Irritated Skin
• Lubricants -- Enhance Intimacy
• Hot & Cold Packs -- Comfort Bladder Pain
• Catheters -- For Bladder Instillations
• Personal Travel Urinals -- For Frequency and Urgency

For informational purposes, we provide brand names and links to product sites.  These links may route you to commercial sites with promotional material not necessarily endorsed by the ICA.

Disclaimer: The ICA does not engage in the practice of medicine.  It is not a medical authority nor does it claim to have medical knowledge.  In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication. © 2009 The Interstitial Cystitis Association.  All Rights Reserved.