CAFÉ ICA, VOLUME 7, NUMBER 5, June 2007

This issue of Cafe ICA is sponsored in part by educational grants from
Medtronic Foundation
Alaven Pharmaceutical LLC
Astra Tech, Inc

In this issue...

1. Hot Off the Press
1.1 ICA Produces Educational Outreach Media Spots for Television and Radio!
1.2 Family Circle Features IC and ICA
1.3 ICA Places Awareness Ad in Urology Times
1.4 Urology Health Extra Spotlights IC
1.5 ICA Reaches Out to Osteopaths

2. Voices in the IC Community
2.1 LPGA Golfer to Speak at Upcoming Illinois Support Group Special Event
2.2 Pain Expert Tackles Important Questions: Excerpt from the ICA Update
2.3 Jackson Hole Star Tribune Runs IC Story

3. News You Can Use
3.1 Plethora Solutions Clinical Trial Update
3.2 Many More Americans Found to be Living with Chronic Fatigue Syndrome
3.3 FDA Approves First Drug for Treating Fibromyalgia
3.4 ICA Call to Action!

4. The Latest IC Research Highlights

5. Upcoming Conferences

6. Products That Can Help YOU Today!

From the ICA Mailroom:

I am especially grateful for the information and, just as important, the hope for our futures the ICA provides. Hope is our lifeline. The thread, though thin at times, ties us to our lives and gets us through feelings of despair, and the mind-numbing, physical, psychological and spiritual pain of IC. -Brenda F.

1. Hot Off the Press

1.1 ICA Produces Educational Outreach Media Spots for Television and Radio!

We are experiencing significant public awareness benefits as a result of our multi-year cooperative agreement with the US Centers for Disease Control and Prevention (CDC). The ICA has positioned an unprecedented amount of media activity on IC and the ICA, including promotional spots on television (through Direct TV and the American News Network's Consumer Edition), and on radio (through coverage on Radio Health Journal).

These public service announcements feature ICA Medical Advisory Board member Robert Moldwin, MD, and dedicated IC patient advocate, Mary Ellen Altieri, RN. The television spots began airing on Saturday, June 23, and the radio spot will begin airing during mid-July. All media spots are directing viewers/listeners to the ICA's website or toll-free number. The television spots are also available for viewing on YouTube, GoogleVideo, and the ICA's website.

After just over one week of "air time" for the TV spots, the response has been overwhelming. For instance, the YouTube public service announcement has already received nearly 1000 views, and viewer have given it a top rating of 5 stars. Our toll-free number has been ringing off the hook, and all comments and feedback from this media blitz have, thus far, been extremely positive and appreciative. The importance of this campaign is that the ICA is getting the word out (on an unprecedented national basis) on IC, on the importance of a proper diagnosis and treatment, and on the support and information available through the ICA.

We hope you enjoy the media spots and we encourage you to provide your family and friends with the links.

1.2 Family Circle Features IC and ICA

As the result of the ICA's spring media tour in New York City, which was made possible by the CDC cooperative agreement, the July issue of Family Circle ran a short and factual article on IC, including an interview with ICA Founder and President Emeritus, Vicki Ratner, MD, and a listing of the ICA website as the go-to place for accurate IC information and much needed support.

The Family Circle July issue is currently available on newsstands.

We also are anticipating an IC-related article in the September issue of Essence Magazine!

1.3 ICA Places Awareness Ad in Urology Times

The ICA recently placed a full-page ad in Urology Times as part of our healthcare professional education outreach campaign. This special issue was distributed to attendees at the American Urological Association Annual Meeting in Anaheim, CA in late May. The ad directed attendees to the ICA's booth at the annual meeting. The issue was also mailed to all Urology Times subscribers.

It is our hope that, through healthcare professional outreach projects such as this, both providers and patients will be better served.

1.4 Urology Health Extra Spotlights IC

ICA Board of Directors member, Rhonda Garrett, was recently featured in the American Urological Association Foundation's (AUAF) Urology Health Extra, a quarterly newsletter designed to keep you up to date on the latest breakthroughs in a variety of urologic health issues. This issue was distributed by the AUAF to attendees at the American Urological Association Annual Meeting in Anaheim, CA in late May.

To read the article, please click here.

1.5 ICA Reaches Out to Osteopaths

The Massachusetts Osteopathic Society, whose motto is "Maintaining a Difference to Make a Difference," held its annual continuing medical education (CME) meeting at the Back Bay Hilton in Boston, on June 22-24, 2007.

Presentation topics included Geriatrics, Alternative Medicine, Orthopedics, Osteopathic Manipulative Medicine, Trends in Practice Management, and more.

The ICA was invited to exhibit at this event by Lucette Nadle, DO, who is the President of the Society and a friend of Molly Glidden, the active, longtime leader of the Natick/MetroWest IC Support Group. Molly advocated for the ICA to have an IC information table in the exhibit hall and Dr. Nadle-who treats people with IC in her own Boston-area osteopathic practice-enthusiastically agreed.

The ICA's attendance at the event was part of the ongoing multi-year IC outreach program made possible by our cooperative agreement with the US Centers for Disease Control and Prevention (CDC). One key aspect of this program is to reach out to medical specialties-beyond urology-with IC diagnostic and treatment educational materials.

Osteopathy is a growing medical field that incorporates all of the traditional allopathic medical principles into a broader, whole-body approach to medicine. Osteopaths are fully licensed physicians who practice, prescribe, and specialize just as MDs do.

The University of New England College of Osteopathic Medicine, which also sponsored a booth at this event, describes osteopathy in a handout entitled What is a DO? "Osteopathic physicians perform surgery, deliver babies, and prescribe medicine in hospitals and clinics across the nation. Whether they're family doctors or specialists, DOs use all the tools of modern medicine. . . and more. They help their patients develop attitudes and lifestyles that don't just fight illness, but prevent it. They give special attention to how the body's nerves, muscles, bones, and organs work together to influence health. Through osteopathic manipulative treatment, they can use their hands to diagnose injury and illness and encourage the body's natural ability to heal itself."

2. Voices in the IC Community

2.1 LPGA Golfer to Speak at Upcoming Illinois Support Group Special Event:

An Evening with Terry-Jo Myers

National IC Spokesperson Terry-Jo Myers is an accomplished LPGA golfer who has suffered from IC for many years. She is a passionate IC advocate who speaks regularly on the recognition and treatment of IC.

Also speaking on the physiology of IC:

Dr. Pouru Bhiwandi, MD
Associate Professor, University of North Carolina

Wednesday, August 8, 2007
7:00 p.m.
Lutheran General Hospital
1775 Dempster Street, Park Ridge. IL

The presentation will be held
in the Auditorium
Located on the ground level of the Parkside Bldg.

We hope that you will be able to attend this insightful evening with Terry-Jo and Dr. Bhiwandi as they discuss IC and managing its challenges. Terry-Jo is a success story and we can all learn from her experiences.

If you plan to attend please contact Barb Zarnikow, Support Group Leader of the Northwest Suburban IC/PBS Support Group of Illinois at
bzarnikow@aol.com
by July 25 as space is limited.

2.2 Pain Expert Tackles Important Questions: Excerpt from the ICA Update

ICA Medical Advisory Board member Daniel Brookoff, MD, PhD speaking at a 2006 ICA event in Bethesda, MD.

The ICA Update Doctor's Forum column recently featured ICA Medical Advisory Board member Daniel Brookoff, MD, PhD, who is Director of the new Center for Medical Pain Management at Presbyterian-St. Luke's Medical Center in downtown Denver, Colorado. Well known for his skillful and compassionate care of IC patients, Dr. Brookoff is certified by the American Board of Internal Medicine with a subspecialty certification in medical oncology and is a member of the American Pain Society. He has had numerous articles published on pain management, drug complications, and pelvic pain.

The column has turned out to be a very popular one, and we wanted to share an excerpt from it with you. To begin receiving the ICA Update, which is a quarterly publication by the ICA that is available to those who contribute $45.00 or more per year, please click here and join the ICA today.

Do you use sleep medications to help patients sleep?
Many people with chronic pain have terribly disordered sleep, and for some it seems that no sleeping pill works. These people seem to sleep differently. They may have bypass tracts that have developed around the thalamus, the part of your brain that normally blocks pain sensations when you're asleep. These people can feel pain all the time, even in their sleep, and some never get any rest. Having a sleep specialist working with us in designing treatments for these patients has been an enormous success.

Sometimes we will find benefit with the use of "nontraditional" sleeping medications. In some cases, instead of a "sleeping pill," patients will have their sleep restored with a sedating opioid medication, such as methadone. Some people who use methadone for daytime pain will often use multiple daily doses, for example, three or four times per day, which can cause the drug to accumulate and result in severe daytime sedation. When methadone is used only once at bedtime, it doesn't seem to have that effect and can be coupled with less-sedating pain medications during the day where appropriate, such as oxycodone or hydrocodone.

Many patients don't get their pain controlled working with their own doctors and travel long distances to see you. Why is their pain so out of the ordinary?
It really doesn't have to be that way. So often, I don't have to do much. Pelvic floor problems can cause a huge amount of pain, and these can be solved. I've seen patients who were contemplating suicide because of their untreated pain where a safe dose of Valium and possibly Percocet [a combination of oxycodone and acetaminophen], along with Elmiron, use of an interferential stimulator, and some exercises has gotten them better fairly quickly. That's terribly sad. It just should not have to come to that. You shouldn't have to fly to Denver just to get Percocet.

Lots of doctors say pelvic pain patients and chronic pain patients shouldn't be given opioids. Why?
I think it's more of a sociopolitical issue than a medical one. Opioids are generally very safe if prescribed for the appropriate patients and if the patients are followed carefully. The doses have to be carefully and gently titrated up, that is increased, and tapered, that is decreased. This kind of careful care doesn't turn people like you into drug addicts. Drug addiction doesn't live in the drug, it lives in the person. Or, as I like to put it, drug addicts don't shoot up so they can go to church. Pain patients love and miss their lives and use their medications so they can live. At the end of the day, drug addicts hate their lives and use drugs to escape life. With opioid pain medications, as with any other medication,physicians have to be constantly asking, "Is the medication making my patient better or making her worse?"

Over time, don't people need higher and higher doses to get the same pain control? And can't opioids cause hyperalgesia-feeling pain from things that aren't normally painful?
A lot of the research that led to the concepts of "hyperalgesia" and the need for ever-increasing doses was done on people who were abusing opioid drugs, and that has never been easy to generalize to people with chronic pain. There has been a ton of research since that time on patients who use opioid medications for the treatment of cancer pain, and that research showed that they don't need to increase their dose of medication unless their disease progresses, causing worse pain. This seems to be the case with people who are suffering with chronic pelvic pain. In distinction to the concepts of perpetual dose increases, many of these patients will lower the doses of pain medications that they use once they have achieved good pain control for several months. There are drugs on the horizon that will actually lower the tolerance that some patients experience with opioid pain medications. These nonnarcotic medications will soon be used along with opioid medications, making them more effective and probably even safer.

2.3 Jackson Hole Star Tribune Runs IC Story

The June 16th edition of the Jackson Hole Star Tribune from Casper, Wyoming, features an article about Nadine Kern, an IC and endometriosis patient who, despite little relief from her symptoms, continues to compete in barrel racing with her horse, Kern.

To read this story in its entirety, please click here.

3. News You Can Use

3.1 Plethora Solutions Clinical Trial Update

Plethora Solutions Holdings PLC has completed patient recruitment into its Phase II clinical study of PSD597 for the treatment of interstitial cystitis. PSD597 consists of 200 mg lidocaine (as 5 ml of 4% lidocaine solution) instilled into an empty bladder followed by 5 ml of 8.4% sodium bicarbonate.

The study is a double-blind, placebo controlled study with patients recruited from over 20 centers in the US and Canada.

The objective of the study is to confirm both immediate and sustained relief of the symptoms of interstitial cystitis and the outcome of the trial will be known later in 2007.

To read the June 25th press release, please click here.

3.2 Many More Americans Found to be Living with Chronic Fatigue Syndrome

Charlotte, North Carolina-June 8, 2007. The most detailed scientific study to date of the prevalence of chronic fatigue syndrome (CFS) found that six to ten times more people have this illness than previously believed. The study, published today in Population Health Metrics (http://www.pophealthmetrics.com/content/5/1/5), was conducted by scientists at the Centers for Disease Control and Prevention (CDC). It provides evidence that CFS is a significant public health problem that affects millions of people in the United States.

Researchers surveyed more than 19,000 residents in Georgia and discovered that 2.54% of the people aged 18-59 met the clinical diagnosis for chronic fatigue syndrome. This is ten times higher than the rate researchers found in the 1990s when they surveyed residents of Wichita, Kansas, and six times higher than the rate found in Chicago, Illinois. In addition to telephone screening interviews, the study design included a detailed telephone interview and a one-day clinical examination for a subset of participants.

According to Dr. William Reeves, the lead investigator on the CDC study, the higher prevalence number doesn't mean that more Americans are getting chronic fatigue syndrome, it means that researchers are getting better at counting them. "We don't think the number of Americans with CFS is dramatically increasing. What is increasing is our knowledge base about the illness. We know so much more about this illness than we did 10 or 15 years ago. This increased knowledge has led to better diagnostic and measurement tools for estimating the number of people who have CFS."

This is the first study ever to screen defined metropolitan, urban and rural populations for chronic fatigue syndrome. Reeves and his research team found no differences in the prevalence of CFS based on the size of the community. While similar studies of CFS and other illnesses have been used to provide estimates of prevalence on a national level, Reeves says, "We cannot rule out the possibility that CFS prevalence is higher in Georgia than other geographic areas."

"One of the most important findings of this study is that about half, 48%, of people who have the symptoms of chronic fatigue syndrome actually have another undiagnosed medical condition," says Dr. Nancy Klimas, an internationally known CFS researcher and clinician based at the University of Miami. Those conditions included previously undiagnosed thyroid disease, anemia, diabetes, heart disease and psychiatric illness. Klimas believes this is vital information for both the public and physicians. "This makes it even more critical for people who have symptoms of CFS to be evaluated by a clinician. Although treatment can be challenging for CFS, it can be treated-and so can most of the other conditions that were found in study participants when they came in for a clinical evaluation. But patients can't get appropriate treatment until their illness is correctly identified."

"Only a few years ago, chronic fatigue syndrome was viewed as a rare condition. This study is important because it reports that chronic fatigue syndrome may be more common than previously estimated," says Anthony Komaroff, MD, a Harvard Medical School professor of medicine and a leading CFS expert.

Komaroff says this study adds to the growing research showing that CFS is neither rare nor an imaginary illness: "Since this condition is defined only by symptoms, some doctors have understandably asked whether there are any objective, measurable biological abnormalities. Recent research from researchers around the world demonstrates multiple abnormalities of the brain and autonomic nervous system, a state of chronic immune system activation, a strong hereditary component, characteristic gene and gene expression patterns, and various abnormalities of energy metabolism in people with CFS. In other words, there is really no support for the view once held by some that chronic fatigue syndrome is a rare condition that may not even be a 'real' illness."

The study has other important implications, according to Kimberly McCleary, president and CEO of the CFIDS Association of America. "Earlier studies showed that less than 20% of Americans with chronic fatigue syndrome have been diagnosed, and that delays in diagnosis and treatment may lead to lower rates of recovery and a more complicated course of illness. This study underscores the need for the 80% who are suffering, but who don't know what's wrong, to receive appropriate diagnosis and care." McCleary continues, "The study is also a call to action to increase research funding to enable scientists to determine the cause or causes of CFS and to identify more effective treatment options to help patients manage this debilitating, and often disabling, condition."

CFS is characterized by at least six months of profound, incapacitating fatigue and postexertional malaise-a worsening of symptoms following physical or mental activity. Other defining symptoms include impaired memory or concentration, sleep problems, muscle pain, joint pain, headaches, sore throat, and tender lymph nodes. The CDC investigators confirmed earlier findings that CFS is more common in women than in men, although significant numbers of men do have the illness. The journal article included no data on the prevalence rate among children, but earlier studies have confirmed that children, especially adolescents, can get CFS. Contrary to early misconceptions, CFS strikes people of all racial, ethnic and socioeconomic groups.

The CFIDS Association is the country's largest nonprofit organization providing information and support for CFS patients and health care professionals. The organization is working with the CDC on its national public health campaign for chronic fatigue syndrome, which was launched in 2006. This campaign provides information and downloadable materials for patients, their families and health care professionals. This information can be found at http://www.cfids.org/cfs and http://www.cdc.gov/cfs.

3.3 FDA Approves First Drug for Treating Fibromyalgia

FOR IMMEDIATE RELEASE
P07-107
June 21, 2007
Media Inquiries:
Susan Cruzan, 301-827-6242
Rita Chappelle, 301-827-6242
Consumer Inquiries:
888-INFO-FDA

The U.S. Food and Drug Administration today approved Lyrica (pregabalin), the first drug to treat fibromyalgia, a disorder characterized by pain, fatigue and sleep problems.

Lyrica reduces pain and improves daily functions for some patients with fibromyalgia.

"Today's new approval marks an important advance, and provides a reason for optimism for the many patients who will receive pain relief with Lyrica," said Steven Galson, MD, MPH, director of FDA's Center for Drug Evaluation and Research. "However, consumers should understand that some patients did not experience benefit in clinical trials. We still have more progress to make for treatment of this disorder."

Persons with fibromyalgia typically experience long-lasting or chronic pain, as well as muscle stiffness and tenderness. Fibromyalgia affects about 3 million to 6 million people in the United States each year. The disorder mostly affects women and typically develops in early-to-middle adulthood.

There is no test for the diagnosis of fibromyalgia. Doctors make a diagnosis by conducting physical examinations, evaluating symptoms, and ruling out other conditions.

Individuals with fibromyalgia have been shown to experience pain differently from other people. Studies have shown that such patients have decreased pain after taking Lyrica, but, the mechanism by which Lyrica produces such an effect is unknown.

Two double-blind, controlled clinical trials, involving about 1,800 patients, support approval for use in treating fibromyalgia with doses of 300 milligrams or 450 milligrams per day.

The most common side effects of Lyrica include mild-to-moderate dizziness and sleepiness. Blurred vision, weight gain, dry mouth, and swelling of the hands and feet also were reported in clinical trials. The side effects appeared to be dose-related. Lyrica can impair motor function and cause problems with concentration and attention. FDA advises that patients talk to their doctor or other health care professional about whether use of Lyrica may impair their ability to drive.

Lyrica already is approved for treating partial seizures, pain following the rash of shingles and pain associated with diabetes nerve damage (diabetic neuropathy).

Lyrica is manufactured by New York-based Pfizer Inc. Pfizer has agreed to perform a study of the drug in children with fibromyalgia and a study in breastfeeding women.

To see a consumer article called Living with Fibromyalgia, First Drug Approved, visit www.fda.gov/consumer/updates/fibromyalgia062107.html

3.4 ICA Call to Action!

We need your help to continue our IC healthcare professional education efforts! Please help us to get the word out about IC within the medical community.

We ask that you print out copies of the ICA Treatment Guidelines from the ICA's website and distribute them to your primary care physicians, nurses, nurse practitioners, physician assistants.

Thank YOU for helping with our Call to Action campaign!

From the ICA Mailroom:

I wanted to give thanks to the association for the helpful disability fact sheet. It was very helpful in helping me plan and organize my application for social security disability. I received a favorable decision, first time application, after just four months, without an attorney. Keep up the good work. -Lonette

4. The Latest IC Research Highlights

For Some, IC Comes on Fast
Greenberg P, Tracy JK, Meyer WA, Yates T, Diggs C, Warren JW, Hanno P. Short interval between symptom onset and medical care as an indication of rapid onset of interstitial cystitis/painful bladder syndrome. BJU Int. 2007 Jun 2.

Although all the analysis is not yet complete, the University of Maryland Events Preceding IC (EPIC) study has already generated a number of published articles and is teaching us new things about the nature of IC. The investigators have learned that, for some patients, IC symptoms come on hard and fast, and that may ultimately provide some clues to IC's cause. Some IC/painful bladder syndrome (IC/PBS) patients look for medical help fast. Of 138 women who had been diagnosed with IC in the preceding year, 49% sought medical care within 7 days, and 31% got to a doctor within 4 weeks. They get medical help faster because they had easier access to medical care than other patients who took longer. Instead, they experienced their symptoms differently and had more evidence of discomfort and inflammation. Later, however, they didn't show differences compared with patients who had symptoms come on more gradually. Careful study of rapid-onset IC/PBS might provide clues to IC's cause, said these researchers.

Treat Every Part of Pelvic Pain
Butrick CW. Chronic pelvic pain: how many surgeries are enough? Clin Obstet Gynecol. 2007 Jun;50(2):412-24.

In a gynecology journal, this urogynecologist made the point that pelvic pain is a complex disease, and that finding only one aspect, such as endometriosis, isn't usually successful. Pelvic pain requires an integrated approach where every source of pain, such as IC as well as the gynecologic sources, is identified and treated.

Look Beyond UTIs for IC, Missouri Physicians Told
Steele AC, McLennan MT. The painful bladder: urinary tract infection and interstitial cystitis in women. Mo Med. 2007 Mar-Apr;104(2):160-5.

In their state (Missouri) medical journal, these gynecology and urogynecology specialists helped educate physicians about IC. They alerted Missouri doctors that, although voiding symptoms in women are often because of infection, patients who have persistent or recurring symptoms might have IC and not a bladder infection. These patients need more thorough evaluation. Although IC remains difficult to treat, multi-modality therapy can provide good relief, they said.

Article Helps Primary Care Doctors Understand IC
Rosenberg MT, Newman DK, Page SA. Interstitial cystitis/painful bladder syndrome: symptom recognition is key to early identification, treatment. Cleve Clin J Med. 2007 May;74 Suppl 3:S54-62.

This review article for primary care physicians aims to help them understand the symptoms of IC so they can improve their ability to identify the disease. IC symptoms overlap with those of other common problems such as overactive bladder, endometriosis, urinary tract infection, and prostatitis. Identifying IC early can help get patients treated or referred to specialists early when standard therapies may be more effective.

Blood Pressure Meds Might Help if IC Is Autoimmune
Phull H, Salkini M, Purves T, Funk J, Copeland D, Comiter CV. Angiotensin II plays a role in acute murine experimental autoimmune cystitis. BJU Int. 2007 Jun 6; [Epub ahead of print]

These basic researchers looked at the possibility that a receptor blocked by a class of high blood pressure medications, called angiotensin II type 1 receptor blockers, might play a role in IC. They targeted this receptor because it has been implicated in the blood vessel congestion, swelling, and scarring seen in autoimmune disease, and IC may have an autoimmune component. Experimental animals that had an autoimmune-like reaction to their own bladder cells and control animals were given two different types of receptor blockers. One was an angiotensin II type 1 blocker (similar to high blood pressure medications) and the other was the angiotensin II type 2 blocker. The control mice had no thickening or adhesions in their bladders but the animals with the autoimmune-type disease did, and they also had inflammation and damage to the bladder lining. All of the diseased mice that got the type 2 receptor blocker also had adhesions and bladder thickening, but it was milder than in the untreated mice, and all of them had inflammation and damaged bladder linings. In contrast, most of the diseased mice that got the type-1 receptor blocker showed no adhesions and bladder wall thickening, none of them had inflammation, and the damage to their bladder lining was minor. If some patients with IC have a cause of their disease similar to these mice, these drugs might be beneficial, said the researchers.

Starch Compounds Could Be Source of New IC Treatments
Drewa T. The urothelium cell culture on the starch scaffold. Acta Pol Pharm. 2006 Mar-Apr;63(2):153-5.

These researchers found that urothelial cells in culture have an affinity for a starch and that they grow under this starch scaffold undisrupted. The investigators theorize that bladder lining cells have an affinity for complex sugar compounds and that these compounds could be used to treat IC.

Abnormal Estrogen Receptor May Play Role in IC
Imamov O, Yakimchuk K, Morani A, Schwend T, Wada-Hiraike O, Razumov S, Warner M, Gustafsson JA. Estrogen receptor beta-deficient female mice develop a bladder phenotype resembling human interstitial cystitis. Proc Natl Acad Sci U S A. 2007 Jun 5;104(23):9806-9. Epub 2007 May 23.

Because, for some women, IC symptoms are worse premenopausally or at certain times during their menstrual cycle, estrogen has been implicated in IC, so these investigators decided to look at what role two different types of estrogen receptors (alpha and beta) might play. They found that in a certain strain of mice in which females are missing the beta receptor, the females have ulceration and shrinking of the bladder lining and infiltration of a certain type of white blood cell, called gammadelta T cells, in the damaged areas. These cells may actually be causing the damage to the bladder lining and may be hyperactive because of an imbalance between alpha- and beta-receptor signaling in these female mice. The investigators think that reduced beta signaling may play a role in causing IC and that the beta receptor may be a good target for medical therapy.

Cells in IC Patients' Bladder Lining More Prone to Die Off
Yamada T, Nishimura M, Mita H. Increased number of apoptotic endothelial cells in bladder of interstitial cystitis patients. World J Urol. 2007 Jun 7; [Epub ahead of print]

These researchers looked for evidence of apoptosis, which is programmed cell death, in bladder lining cells of IC patients. They used specimens from two groups of IC patients after hydrodistention and from control patients without IC. One group of IC patients had pain, and the other did not. The patients with pain had significantly higher levels of an early biochemical marker of this process than patients with urgency or control patients. The researchers could see that cells of the smallest blood vessels in the lining were dying. Increased rates of cell death of these cells in small vessels might play an important role in IC accompanied by bladder pain, the investigators concluded.

Lining Cells Don't Develop in Some IC Bladders
Southgate J, Varley CL, Garthwaite MA, Hinley J, Marsh F, Stahlschmidt J, Trejdosiewicz LK, Eardley I. Differentiation potential of urothelium from patients with benign bladder dysfunction. BJU Int. 2007 Jun;99(6):1506-16.

This research team looked at bladder lining cells' ability to become specific and distinct cells (called differentiation) by looking at their appearance as well as by looking at the expression of certain claudin proteins and by seeing if a gene for a protein that helps form the top barrier layer could be switched on. The cells came from IC patients as well as from patients with overactive bladder muscle and stress urinary incontinence. Although some of the cell lines from IC patients were normal, many other cell lines from IC patients just didn't start that normal growth and development process at all. Most of the cell lines from patients with detrusor muscle overactivity were normal, and a few of the cell lines from patients with stress incontinence had compromised development. It could be that, in some IC patients, failure of normal growth and development of bladder lining cells may contribute to the disease.

Researchers Find Missing Piece of Bladder Physiology Puzzle
Saban R, Simpson C, Vadigepalli R, Memet S, Dozmorov I, Saban MR. Bladder inflammatory transcriptome in response to tachykinins: neurokinin 1 receptor-dependent genes and transcription regulatory elements. BMC Urol. 2007 May 22;7:7.

A class of biochemicals called tachykinins (which includes substance P) and their receptors are found throughout the urinary tract and are known to regulate bladder inflammatory and immune responses and hypersensitivity. Research has implicated these substances and their receptors in urinary tract diseases such as nerve-related bladder dysfunction, outflow obstruction, overactive bladder, and IC. But drugs that block these receptors haven't been effective, so these researchers decided to look for another point where they could intervene in the physiologic pathways that include these receptors. They looked for genes related to these receptors and found one, called Nkx2.5, that was related to 36 different gene products, including several related to bladder development and with inflammation. New therapies could be aimed at controlling the activity of this gene in the urinary tract.

Sacral Nerve Stimulation Uses Expanding, Technology Improving
Oerlemans DJ, van Kerrebroeck PE. Sacral nerve stimulation for neuromodulation of the lower urinary tract. Neurourol Urodyn. 2007 Jun 11; [Epub ahead of print]

This review article on sacral nerve stimulation notes that success has improved because of technical improvements, such as the two-stage implantation test. The indications are expanding from overactive bladder and urinary retention to IC, neurologically based lower urinary tract problems, voiding problems in children, and fecal incontinence and constipation. How sacral nerve stimulation works still isn't known. Recent studies point to changes in the central nervous system.

Stressed-Out Rats Have More Bladder Pain
Robbins MT, Deberry J, Ness TJ. Chronic psychological stress enhances nociceptive processing in the urinary bladder in high-anxiety rats. Physiol Behav. 2007 Apr 13; [Epub ahead of print]

Apparently, there is a strain of rat that has higher anxiety than the common lab rat. Researchers stressed out both kinds of rats with a water-avoidance test and "sham stress" test. Acute stress didn't make much difference in how the rats' bladders responded to distention. But when the stress was chronic, the high-anxiety rats had more pronounced responses to bladder distention. The high-anxiety rats also defecated more than the regular rats. The finding that chronic stress enhanced bladder pain only in high-anxiety rats supports a critical role of genetics, stress, and anxiety as factors that can make pain worse in painful urogenital disorders, such as IC, concluded the researchers.

DMSO May Work by Relaxing Bladder Muscle
Shiga KI, Hirano K, Nishimura J, Niiro N, Naito S, Kanaide H. Dimethyl sulphoxide relaxes rabbit detrusor muscle by decreasing the Ca(2 ) sensitivity of the contractile apparatus. Br J Pharmacol. 2007 Jun 4.

This basic research looked at how DMSO affects bladder muscle and found that it relaxes muscle by decreasing the calcium ion sensitivity of muscle filaments. This may be responsible for the therapeutic effect in IC.

Small BCG Study Positive, Conflicts with Controlled US Study
Aghamir SM, Mohseni MG, Arasteh S. Intravesical Bacillus Calmette-Guérin for treatment of refractory interstitial cystitis. Urol J. 2007 Winter;4(1):18-23.

These urologists tried instillations of Bacillus Calmette-Guérin (BCG) in 13 patients to treat IC that didn't respond to other therapies. Two years after the treatment, patients' frequency had improved 52%, their nocturia 43%, their urgency 29%, their pelvic pain 43%, their pain with intercourse 58%, their painful urination 6.5%, their O'Leary-Sant Symptom Index scores 58%, and their Problem Index scores 62%. The patients voided volume also improved 90%. The investigators concluded that BCG is relatively effective but that its efficacy is modest and lasts for at least two years in most patients. They also said it was safe and well tolerated. This study was not placebo controlled, like a large clinical trial in the United States, which did not find that BCG did significantly better than placebo.

ICA Resources

NEW! 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!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic04.html#BKBYCA07

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!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic10.html#BKMF06

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic04.html#BKBYCI06

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. ICA Founder and President, Vicki Ratner, MD, moderated the event.

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic09.html#UM05

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

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic01.html#TRUM05

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic01.html#XOP205

5. Upcoming Conferences

International Continence Society 37th Annual Meeting
ICS 2007
Rotterdam, Netherlands
20 August 2007 to 24 August 2007
Click here to visit the event web site.

ICA Regional Forum / Detroit
Saturday, September 8, 2007

The Sheraton Detroit Novi Hotel, Detroit, Michigan
1:00 pm to 5:00 pm, with Registration from 12 Noon to 1 pm

Please click here to register today or call 1-800-HELP ICA.

Second Annual Central Ohio Regional IC Meeting
September 15, 2007
Wexner Hall, College of Veterinary Medicine
The Ohio State University
Columbus, Ohio

Please click here for more information including registration instructions.

SUNA 38th ANNUAL CONFERENCE
October 12-16, 2007
Hyatt Regency
Phoenix, AZ

This year's conference will offer a variety of topics and outstanding speakers. Whether your goal is to learn more about urologic medications, influence health policy, or learn the latest in urologic technologies, there is something for everyone. Preconference workshops on basic urology, advanced practice, and certification review will also be offered. This conference will help you improve your patient care, broaden your horizons, and reach new heights in career satisfaction.

For more information, visit SUNA's website at /portals/0/images/cafeica/www.suna.org or call toll free 1-888-TAP-SUNA.
Click here to visit the event web site.

American Public Health Association
2007 Annual Meeting & Exposition
November 3-7, 2007
Washington, DC

SUNA 2008 ANNUAL SYMPOSIUM
February 28 - March 2, 2008
Tampa Waterside Hotel and Marina
Tampa, FL

This conference, focusing on pelvic pain and pelvic floor disorders, will offer a variety of topics and outstanding speakers, from basic workshops to advanced practice content, all offering current evidence-based information. A certificate of completion will be offered to attendees completing the Urodynamics track. For more information or to submit an abstract, visit SUNA's website at /portals/0/images/cafeica/www.suna.org or call toll free 1-888-TAP-SUNA

6. Products That Can Help YOU Today!

CystoProtek®: 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.alavenpharm.com/ or call 888-317-0001.

Desert Harvest Aloe Vera: Aloe vera is a powerful anti-inflammatory and pain reliever. 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.

Desert Harvest makes this very concentrated form of aloe vera just for IC patients. They remove the two chemicals in the aloe plant that cause diarrhea, and all of the water and fiber, leaving all of the other ingredients of the plant intact. Desert Harvest dries their aloe without heat. Heat can damage the active ingredients, and adds no fillers or preservatives.

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

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/.

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

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

Minute Maid Acid-Reduced Frozen Orange Juice Concentrate: 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 http://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 click here.