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NIH Launches Health Disparities Research Network
8/11/2010

The National Institutes of Health (NIH) launched a multidisciplinary network of experts to investigate new approaches to understanding the origins of health disparities (differences in the burden of disease among population groups). The goal of the network is to identify areas where interventions or policy changes can have the greatest impact in eliminating health disparities.

The University of Michigan School of Public Health, Ann Arbor, will establish the Network on Inequality, Complexity, and Health (NICH). Comprised of scientists with expertise across disciplines, including economics, biology, ecology, computer science, education, sociology, mathematics and epidemiology, NICH will be the first network to apply systems science approaches to the study of health inequities. More information on the NICH is available on the NIH website.

Recruitment for Pfizer IC Tanezumab Study Temporarily Stopped
7/28/2010

We reported in the past few months that Pfizer is testing tanezumab which is an antibody directed against nerve growth factor for treatment of pain for many chronic conditions including IC. You may have heard that an osteoarthritis trial with tanezumab was stopped because of concerns about bone side effects. As far as we know, these side effects have not been seen in patients participating in the IC trial; however, until the question is resolved, Pfizer has stopped recruiting patients for the IC trial.

As we reported from the AUA meeting, other companies are working on nerve growth factor antibodies for pain, including Abbott Laboratories, Johnson and Johnson, Sanofi-Aventis, and Regeneron. There are various kinds of nerve growth factor antibodies for different pain conditions. The antibodies aren't all the same.

Check back for more news on the status of the IC study.

Results of ICA CAM Survey to be Presented at Pain Conferences
7/13/2010

Complementary and alternative medicine (CAM) use by IC patients is on the agenda at two upcoming meetings of pain professionals. 

As reported in the Summer 2009 issue of the ICA Update, more than 2,100 of you responded to the ICA’s 2009 CAM Internet Survey. In collaboration with Amy Rejba-Hoffmann, CRNP and ICA Medical Advisory Board member Kristene Whitmore, MD, both with the Pelvic and Sexual Health Institute in Philadelphia, the ICA will present poster sessions this August and September at key scientific meetings with highlights of survey findings:

  • International Continence Society/International Urogynecological Association Joint Annual Meeting, Toronto, Canada 
  • American Academy of Pain Management, 21st Annual Clinical Meeting: Exploring the Science, Practicing the Art: Integrative Pain Management for Optimal Patient Care, Las Vegas, NV


Missed the report about the survey? Order a back issue of the Summer 2009 ICA Update.

Calling IC Patients to Complete Short Survey
7/13/2010

Remember when you were diagnosed? Think back to the time when your doctor first said the name interstitial cystitis. Share this initial experience, as well as how talks with your doctor went at your 6-month follow-up appointment.

You are invited to participate in a confidential, online survey conducted by Ortho Women's Health & Urology™ about patient-doctor communication. The goal of the survey is to understand training gaps for doctors and develop educational materials to help doctors be better communicators.
Link to survey

AUA 2010 – Experience the Meeting Virtually!
7/7/2010

Didn’t make it to San Francisco for the AUA 2010 conference? Experience the sessions as if you were there via webcast! View Phillip Hanno, MD discussing the preliminary AUA IC Treatment Guidelines and listen to Robert Evans, MD present initial findings on a potential new pain medicine. Go to the AUA highlights page for links to all the IC-related webcasts.

Pelvic Floor Physical Therapy – A Huge Help for Those Who Know
6/30/2010

Over 600 people responded to the June ICA Quick Poll about pelvic floor physical therapy. Those who had tried pelvic floor physical therapy had great success, with 58% reporting that their IC symptoms improved after treatment.
Read More

Online Library of IC Research
6/24/2010
Looking for the latest research on IC?  Every month the ICA scourers research published in medical journals and publishes the findings in plain language, as well as offers unique insights into the hope this research gives to all of us affected by IC. These reviews include summaries of journal articles indexed in MEDLINE and from other published sources. Interstitial cystitis and chronic pelvic pain literature review topics include treatments and drug discovery, social issues, epidemiology, diagnosis, etiology, medical education, and basic research.
Check out all of the “Literature Reviews” on the ICA website.

New Pelvic Pain Clinic for Women Opens at Loyola
6/19/2010
Loyola University Health System (LUHS) has opened a clinic to treat chronic pelvic pain (CPP) in women.

Read More.

ICA @ AUA — IC News Wraps Up with Marker that Could Bring an IC Test Soon
6/2/2010

Tuesday wrapped up IC research presentations here at the American Urological Association’s (AUA’s) annual meeting with a potential new marker and more.
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ICA @ AUA — IC’s Big Day
6/1/2010

Monday was an exciting day for IC here at the American Urological Association’s annual meeting including a course on pelvic pain and IC, big news on a new drug for IC pain, a lively debate about what IC is and what to call it, another presentation of AUA’s IC guidelines, and research sessions with presentations of more than a dozen studies important for IC.
Read More

ICA @ AUA — Abuse and IC Not Connected
5/31/2010

San Francisco—In the past few years, studies showing a correlation between abuse and IC prompted debate and controversy. Today, a new study presented here in a specialty society gathering at the American Urological Association meeting helped end the debate and move IC research to focus on something more important—finding new medical treatments to get you better.

J. Curtis Nickel, MD, presented the study by his team at Queens University in Kingston, Ontario, and other urologists from the United States and Europe at the meeting of the Society for Infection and Inflammation in Urology. They found that there was no appreciable difference in rates of childhood abuse between IC patients and controls. The difference just barely reached statistical significance and did not reach clinical significance. That should help counter some doctors’ assumption that IC is caused by the psychological consequences of abuse and that medical therapy—or different or additional medical therapy—won’t help. As one urologist who attended remarked, we can stop blaming the victim.

This research helped validate the concerns medical writer Penny Allen raised in her story published in Urology Times last year about the issue of abuse in IC patients. Allen is also the editor of the ICA Update and covers IC research and treatment news for the ICA. Coincidentally, today, Allen won the 2010 American Urological Association award in the trade journalism category for that very IC story. In her thoughtful analysis of the issue, Allen demonstrated that:

  • The rates of abuse in IC patients in published studies didn’t agree.
  • Other large studies of people abused in childhood didn’t show they had much more chronic pain later in life than people who weren’t abused.
  • Urologists who see IC patients may not have the training to help patients who reveal they have been abused.
  • The issue could be diverting much needed focus away from medical treatment and research.

ICA @ AUA: First American Guidelines for Diagnosing and Treating IC
5/30/2010


The American Urological Association’s annual meeting just got started today at 1 pm. By 2 pm, there was already big news for IC. On behalf of the AUA’s IC guidelines committee, Phil Hanno, MD, presented the first-ever guidelines for diagnosis and treatment from the association. Dr. Hanno is also co-chair of the ICA’s Medical Advisory Board.

The guidelines will be a boon for IC patients who see doctors who don’t specialize in IC treatment and may not be aware of the medical literature that supports certain tests and treatments—or doesn’t. Notably, the new guidelines don’t support using the potassium sensitivity test as a valid one for IC, nor do they support cystoscopy with hydrodistention under anesthesia for “uncomplicated” cases, that is, cases that are not severe and don’t have many accompanying conditions, such as vulvodynia.

The guidelines emphasize conservative, noninvasive approaches to start, for example, an IC-friendly diet, physical therapy aimed at pelvic floor dysfunction, and stress management. Therapies called first-line treatments include the oral medicines amitriptyline, histamine blockers such as hydroxyzine (Atarax, Vistaril) or cimetidine (Tagamet), pentosan polysulfate (Elmiron) and bladder instillation therapy. Treatment recommends then step up through five levels, but hearteningly, no matter what level, the guidelines emphasize the importance of pain management.

Dr. Hanno emphasized that these guidelines are a work in progress and far from the final word on IC diagnosis and treatment. Furthermore, the guidelines reflect what’s been published so far in controlled trials or other trustworthy studies and sometimes on expert opinion, so they don’t necessarily include helpful treatments that IC experts are just starting to use and research.

Check out our video interview with Dr. Hanno about the diagnosis and treatment guidelines and learn more.

Severe Chronic Pain – Worse for Your Health than Heart Disease
5/12/2010

The negative effects of chronic pain on health have been well documented by researchers. However, a new study revealed the magnitude of the long-term impact that severe chronic pain can have on your health. In 1996 a group of 6,940 individuals were recruited and surveyed about their general health and experience with chronic pain. Socio-demographic details were also collected. Ten years later, researchers linked responses from these study participants with a database of reported deaths.

Researchers successfully mapped records for 5,858 (84 percent) of participants from the original study; of those, 1,557 (27 percent) were no longer living. Results showed that chronic pain, and severe chronic pain in particular, was related to a higher risk of death compared with other health issues, including cardiovascular disease. After adjusting for socio-demographic factors, the increased risk for death due to chronic pain remained significant.
Read the original abstract.

Spreading the Word among Pain Practitioners
4/22/2010

Medical advisory board member Robert Moldwin, MD, and the ICA's executive director Barbara Gordon and communications manager Penny Allen co-authored an article about IC for the Spring 2010 issue of Pain Practitioner, a publication of the American Academy of Pain Management (the Academy). The Academy is a non-profit organization that educates clinicians about pain and its management through an integrative interdisciplinary approach.
Read an overview of the article in the Research/Literature Review section of the ICA website.
Read full text of the article.

Sound Bites on Overlapping Conditions
4/14/2010

Research demonstrates that people with IC may also be affected by other health issues. During the past week, news about some of these conditions made the headlines.
Read More

New OxyContin Formulation Approved
4/8/2010

The US Food and Drug Administration (FDA) approved a new formulation of controlled-release oxycodone (OxyContin). The goal of the new formulation is to help discourage misuse and abuse. Hopefully, this will ease doctor’s concerns about prescribing to legitimate pain patients and help make the painkiller more available to patients who need this medicine.
Read More

NIDDK: Senior Scientific Advisor for Women's Urologic Health Needed
3/25/2010

The NIDDK is seeking exceptional candidates to serve as the Senior Scientific Advisor for Women’s Urologic Health in their extramural Division of Kidney, Urologic and Hematologic Diseases. The incumbent will be responsible for developing and maintaining a research program in diseases of the female bladder and urethra, and multi-system diseases in which there is prominent involvement of the urogenital system. They will have primary responsibility for the development of new scientific research initiative concepts and for assuring that the multi-center clinical trials and studies supported by the Division are conducted in accordance with NIDDK and NIH policies. Applications are being accepted until April 15, 2010. For further information, please call 301-594-7772 301-594-7772.

Rocky Mountain High: ICA Visits New Multidisciplinary IC Clinic
3/11/2010

The Urology Center of Colorado (TUCC), a full-service urology clinic in Denver, CO, is now accepting IC patients. This newly formed IC team includes 2 urologists who work in tandem with a multidisciplinary team of nurse practitioners, physical therapists, and dietitians. At a recent visit to the new center, ICA Executive Director Barbara Gordon, met the staff, toured the facility, gave an overview about the ICA at a nursing in-service program, and attended a patient support group meeting. For more information, see the TUCC website.

Most IC Patients Try to Exercise
3/3/2010

During the past month, 917 IC patients shared their exercise practices with the ICA.
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ICA @ SUFU 4U
3/3/2010

Last weekend the ICA joined 300 doctors, including many members of the ICA’s Medical Advisory Board, at the Society for Urodynamics and Female Urology (SUFU) conference in St. Petersburg, FL.
Read More

Calling Pain Management Providers: Online CME Evaluation – NIH Needs Your Participation
3/3/2010

The National Institute on Drug Abuse (NIDA), one of the National Institutes of Health, is seeking feedback on a new CME program developed for pain management providers.
Read More

ICA MAB Member Daniel Carr, MD, Working on New Pain Medicine
3/3/2010

ICA Medical Advisory Board member, Daniel Carr, MD, and Javelin Pharmaceuticals, Inc., bring news of a new pain medicine for treating mild to severe pain. The US Food and Drug Administration (FDA) has accepted the Dyloject™ (diclofenac sodium) Injection for formal review. Initial studies of this intravenous (IV) non-steroidal anti-inflammatory drug (NSAID) were done with seniors (65 years of age and older) and patients with kidney and liver insufficiency. If approved, Dyloject may offer a non-opioid alternative for patients with acute moderate-to-severe pain. Fingers-crossed that this research may offer insights into a new IC flare medicine.
Learn More

Tiny Bubbles May Make You Feel Fine
2/17/2010

Last August the ICA reported that a new liposome treatment pioneered by Dr. Michael Chancellor, showed promise in clinical trials conducted in Taiwan.
Read More

Keay’s Research Key in New IC Therapy
2/11/2010

Susan Keay, PhD, University of Baltimore faculty and ICA Medical Advisory Board member, and Rockville-based Celek Pharmaceuticals LLC were recently awarded $159,500 to evaluate the efficacy of a new therapy for IC. This is exciting news for the IC community, which has followed the research of Dr. Keay and her scientific team for quite some time. This team identified anti-proliferative factor (APF), an epidermal growth factor, as a potential biomarker for a diagnostic test for IC. Much of the early research conducted on APF was funded by ICA Pilot Program and Fishbein Foundation grants.

VCU Researchers Demonstrate Importance of NGF in Mediating Bladder Inflammation
2/10/2010

Researchers at the Virginia Commonwealth University (VCU) School of Medicine in Richmond, VA, further demonstrated the importance of nerve growth factor (NGF) as a potential mediator in bladder inflammation. Though this research is looking at hypertrophy, or thickening of the bladder wall, an increase in bladder mass causes symptoms similar to IC such as urinary frequency, urgency and pain. As the ICA reported in October 2009, ICA Medical Advisory Board member Robert Evans, MD, presented findings at the American Academy of Pain Management’s annual meeting of a NGF inhibitor being tested by Pfizer, Called Tanezumab, initial study findings of this NGF inhibitor produced clinically significant reductions in pain. Development of therapies based on the VCU work may lead to similar treatment options for people with IC.
Read More

Research Opportunity: Dedicated IC Funds Through DOD
2/10/2010

The Fiscal Year 2010 (FY10) Defense Appropriations Act provides $50 million to the Department of Defense Peer Reviewed Medical Research Program (PRMRP) appropriation to provide support for military health-related research of exceptional scientific merit.
Read More

Foundation for Physical Therapy Accepting Applications for New Research Grant
2/10/2010

The Foundation for Physical Therapy has issued a call for proposals for the Clagett Family Research Grant. This grant is intended specifically to fund research efforts exploring exercise interventions for older adults with multiple chronic conditions. Letters of intent are due by March 1, 2010.
Read More

NIH Small Clinical Trial Training Course - Register Now
2/2/2010

The FDA's Office of Orphan Products Development (OOPD) and NIH's Office of Rare Diseases Research (ORDR) have joined together to create a course entitled "The Sceince of Small Clinical Trials." The course deals with issues arising in the design and analysis of clinical trials based on small study populations. It will consist of seven 2-hour lectures beginning on Tuesday, February 16, 2010 and continuing throughout the following several weeks.
Learn more about this course.

ICA Presses NIDDK to Confirm Commitment to IC Research
2/2/2010

In a letter dated January 25, 2010, the ICA thanked NIDDK for their current IC research efforts and the extraordinary approach to scientific research being carried out through the Multidisciplinary Approach to Pelvic Pain Research. The ICA also pressed NIDDK to confirm that funding levels of IC research will not decline in the next budget cycle.
Read Letter

NIH to Get $1 Billion More in Funding in Obama’s Proposed Budget
2/2/2010

President Obama released his FY 2011 budget on Tuesday, February 2. According to an HHS summary, the budget requests $32.089 billion for NIH, an increase of $1 billion (3.2%) over FY 2010. Budget documents are available on the OMB Web site.

New IC Clinical Trial for Patients with Vulvodynia
1/28/2010

A new clinical trial at Scripps Clinic in San Diego, CA is now recruiting IC patients with generalized vulvodynia for participation in a study of intravesical therapy.
Read More

Hopeful New Treatment for Hunner's Ulcers: Triamcinolone
1/20/2010

At the 2009 International Continence Society annual meeting, Genoa G. Ferguson, MD, a resident at Washington University, St. Louis, reported that injection of triamcinolone at the lesion sites produced significant reductions in symptoms of Hunner's ulcers.
Read More

IC Patients More Sensitive to Pain, According to a New Study
1/20/2010

Researchers in Italy say they have some direct evidence for central sensitization in interstitial IC. Central sensitization, which is essentially an increase of pain signals in the central nervous system, is thought to contribute to perpetuation of pain (and possibly its initiation) in the condition.
Read More

New Oral Solution for Lyrica Contains Artificial Sweetener & Flavoring
1/12/2010

For anyone with swallowing problems who has found relief from pregabalin (Lyrica) tablets, Pfizer now offers an oral solution form of the medicine. If you switch, proceed with caution. To help mask the bitter taste of the pregabaln, the solution contains a sweetening agent (sucralose) and artificial flavoring (strawberry). Ask your doctor about getting a sample before shifting your prescription so you can test your tolerance for these additives. Many patients report that artificial sweeteners and flavorings irritate their bladder.

Read more about the overlap between IC and Fibromyalgia.
Find out about eating with IC, and the artificial sweeteners and ingredients that IC patients report irritate their bladders.

NIH Recovery Act Funding Opportunity
1/6/2010

The National Institutes of Health (NIH) issued a new RFA titled "Recovery Act Limited Competition: NIH Director's Opportunity for Research in Five Thematic Areas." The competition opens on February 15 and applications are due by March 15. About $80 million is expected to be available for awards under the RFA. According to NIH, "This program will support projects that address research endeavors in specific areas that will benefit from significant three-year funds without the expectation of continued NIH funding beyond this period. The research supported by the program should have high short-term impact, and a high likelihood of enabling growth and investment in biomedical research and development, public health, and health care delivery." The five thematic areas correspond to Dr. Francis Collins' earlier announced priorities: applying genomics and other high throughput technologies, translating basic science discoveries into new and better treatments, using science to enable health care reform, focusing on global health, and reinvigorating the biomedical research community.
Learn More

Planning Grant
12/22/2009

NIH recently released a planning grant for future research. The overall objective of the Planning Centers for Interdisciplinary Research in Benign Urology (IR-BU) (P20) is to foster the establishment of interdisciplinary teams necessary for advancing understanding of symptomatic benign urological disorders. This is a general urology RFA can be applied to IC research. The grant covers $200,000 in direct costs per year for a two-year period: http://grants1.nih.gov/grants/guide/rfa-files/RFA-DK-10-001.html.

Ancillary Studies Program Announcement
12/22/2009

The NIDDK invites investigator-initiated research project applications for ancillary studies to ongoing large-scale clinical trials, epidemiological studies and disease databases supported by the Institute. Datasets are available for the ICCN, Bach and RICE studies. Goals of these ancillary study proposals should be to extend the the knowledge of the diseases being studied by the parent study investigators under a defined protocol. The proposed studies may require additional data or sample collection but may not interfere with the primary objectives of the main study. Each applicant must abide by the procedures for conducting ancillary studies established by the parent study group. See the Ancillary Studies Program Announcement (PAR-07-024). Send inquiries to John Kusek, PhD.

Neuroimagining in Urologic Pelvic Pain an Associated Disorders Conference-Postponed
12/9/2009
This conference has been postponed until further notice.

International conference focusing on the use of neuroimaging in urologic pelvic pain and associated disorders to review and establish the current state of knowledge related to functional magnetic resonance imaging (fMRI) and other neuron-imaging modalities, with a particular focus on their use in urologic pelvic pain and associated disorders; stimulate research and clinical application in this area; foster the development of multi-specialty collaborations in utilizing these clinical/diagnostic modalities; and provide recommendations to the NIDDK for future research in advancing this area. We'll send you more details as they are released.

Rand Interstitial Cystitis Epidiemology (RICE) Prevalance Study May Extend Reach to Men
12/9/2009

During a recent meeting with NIDDK Director Griffin Rodgers and his senior staff, Executive Director Barbara Gordon and ICA Medical Advisory Board Member Dr. Dan Brookoff received an update on the RICE project. Perhaps you recall that RAND researchers presented findings at the American Urological Association meeting. In case you missed it, here's the Podcast (starts at 13:00) about the study which found that 3 to 8 million women in the US report IC symptoms. NIDDK and RAND are investigating the feasibility of repeating the study to measure the prevalence of IC symptoms among men. Based on experiences with other studies, this may prove more challenging because survey response rates are generally lower among men. More to come on this.

Taris "Pretzel" Promising Clinical Trial Results
12/9/2009

Taris Biomedical announced the successful completion of a Phase 1 clinical study of its new drug delivery system. Phase 1 studies are proof of concept tests, evaluating the safety and tolerability of medical devices. This study establishes the proof-of-concept for LiRIS (Lidocaine Releasing Intravesical System), a small, soft, pretzel-shaped tube designed to provide sustained release of pain medicines and other drugs directly to the bladder. Taris plans to continue clinical trials and hopes to release this new treatment option for IC in 2010.

NCCAM's 10th Anniversary Research Symposium
12/8/2009

The National Center for Complementary and Alternative Medicine held their 10th Research Symposium on December 8th, 2009. Alison Shaffer, ICA Social Marketing Manager, attended to get updates on the latest CAM research and how new findings might be relevant to IC treatments. Researchers presented findings on a variety of CAM studies and discussed topics including natural products, mind-body medicine, and the intersection of behavioral science and integrative medicine. You can view the entire symposium or listen to a podcast of the event here.

Calling all Researchers: New Pain Funding Opportunity from NIH
11/19/2009

A new funding opportunity announcement (FOA) was released soliciting grant proposals from researchers in the pain field to stimulate and foster a wide range of basic, clinical, and translational studies on pain. Read More

$1.8 Million Awarded for Pain Research
11/11/2009

Researchers from the U of Michigan received $1.8 Million to develop a new therapy for neuropathic pain, which is a condition in which patients experience pain due to damage to a nerve without obvious injury to the tissue.
Read More

Pain Research Yielding Help for IC Patients
10/30/2009

At the American Academy of Pain Management’s annual clinical meeting in Phoenix this month, providers learned how to integrate the latest traditional and alternative therapy into their practices.
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The FDA de-mystifies the investigational drug process
10/29/2009

On October 15 the FDA held a day-long public workshop to de-mystify the FDA Center for Drug Evaluation and Research’s (CDER) Investigational New Drug (IND) process. Find power point presentations from all presenters and more at the event website.
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New NHC-NIH Collaborative Research Database
10/28/2009
The National Health Council, in partnership with the NIH Office of Extramural Programs, is developing a database that would make information on unfunded but worthwhile NIH research proposals available to the NHC's members and other potential funders of health research.

Site testing will begin in October 2009. Once testing is complete, NIH will notify all non-funded applicants deemed significant and of scientific and technical merit of the availability of the database. The plan is to fully launch the database in January 2010.
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Watson Pharmaceutical Uracyst Trial
10/21/2009

Watson Pharmaceuticals is currently recruiting participants for a clinical trial studying the safety and effectiveness of Uracyst. Women who are 18 years of age and have a diagnosis of IC/PBS may be eligible to participate.
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Liposome Patient Trial Shows Promise for New Treatment
8/27/2009

The first trial of liposomes for IC in actual patients has just been published, taking a giant step forward toward getting a helpful new therapy to you.
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UraCyst to be Available in Italy
8/12/2009

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.
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Bringing New Treatments to Market
8/7/2009

Ever wonder why it seems to take such a long time for new IC medications to become available? Here’s the scoop!
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NVA Funds First Vulvodynia Treatment Registry
7/3/2009

The NVA awarded Drs. Georgine Lamvu, Denniz Zolnoun and Lori Boardman grants to develop and implement the first-ever Vulvodynia Treatment Registry. Launching in fall 2009, this multi-site registry will allow researchers to study the efficacy of multiple treatments, including, but not limited to, topical medications (eg, lidocaine, gabapentin), oral "pain-blocking" medications (eg, tricyclic antidepressants, anticonvulsants, and muscle relaxants), physical therapy, and surgery. Women receiving medical care at the University of North Carolina, University of Central Florida, and Florida Hospital will be eligible to participate in the Registry.
Read More

New Drug Delivery Option
7/2/2009

TARIS Biomedical, a new pharmaceutical company, announced plans to develop a lidocaine-releasing intravesical system (LiRIS). IC is the first area of focus for LiRIS, which releases a sustained dose of lidocaine (found to decrease IC symptoms for many patients) directly into the bladder. The new device, which is inserted via cystoscope or catheter into the bladder, floats in the urine as the medicine is released across several weeks. The device is removed by conventional, cystoscopically. Scientific advisory staff include leading IC physicians, such as ICA Medical Advisory Board member, Robert Moldwin, MD. For more information, go to TARIS Biomedical and click on the “Technology” tab to see a snapshot of how the device works.

Two Surveys Need Your Help
6/10/2009
If you haven’t already taken these two surveys, please do!
  • University of South Florida (USF) nutrition survey: For those of you who gave up before in frustration, USF reports the online survey tool is now working well. USF is asking people with IC, 18 years or older, to participate in the online survey. The goal of the study is to learn more about the impact of diet on IC. Please allow 15 to 30 minutes to complet e the survey.
  • Experience with standard treatments: Have you wondered whether to have tests and treatments your urologist has recommended for chronic IC symptoms? If you have not yet filled out this survey it is not too late to do so! Also review responses from the first 750 patients, many from the United Kingdom. To date about 1,500 people have reported their experience with standard treatments like hydrodistention, instillations, dilation, neuromodulators, surgeries, and 61 prescription drugs. See articles published in the journal UROLOGY, National Women's Health Network, and Our Bodies Ourselves blog.
     
IC Experts Discuss Merits of Current IC Diagnostic Options and Treatments
3/12/2009
The International Journal of Clinical Practice features Diagnostic Options for Early Identification and Management of Interstitial Cystitis ⁄ Painful Bladder, in its December 2008 issue. Written by two renowned IC experts, John B. Forrest, MD, of Urologic Specialists of Oklahoma in Tulsa, and Robert M. Moldwin, MD, of the Smith Institute for Urology, New Hyde Park, New York, who is a member of the ICA’s Medical Advisory Board, this review article reaches a worldwide readership of clinicians.

The article discusses the merits of current IC diagnostic options including screening tools, cystoscopy with hydrodistention, bladder biopsy, the potassium sensitivity test, intravesical anesthetic challenge, urodynamics, and urinary markers. A section on IC treatment options is also included, and discusses oral medications, bladder instillations, dietary modification, and physical therapy.

Drs. Forrest and Moldwin emphasize the importance of early diagnosis and treatment, as well as good follow-up. They point out that early diagnosis and treatment can bring about better results for the patient, but that current available treatments can take time to work. They prescribe education, reassurance, and empowerment from the healthcare provider to encourage patients to participate in and stick with their treatment plan. They also argue that multimodal therapy with an emphasis on patient education can help ensure success in treating IC.

New Fibromyalgia Medicine -- Special Considerations for IC
2/28/2009

In January 2009, the FDA approved the antidepressant milnacipran (Savella) for the treatment of fibromyalgia, one of the frequently diagnosed related conditions in people with IC.  In clinical trials, the drug reduced pain intensity by about 50 percent, and fatigue.  A norepinephrine serotonin reuptake inhibitor (NSRI), Savella contains a higher ratio of norepinephrine to serotonin activity than serotonin-norepinephrine reuptake inhibitors (SNRIs), which is thought to make it more active against pain.  Savella is the third prescription medicine to be FDA approved for the treatment of fibromyalgia.  Pregabalin (Lyrica), an anticonvulsant, was approved in June 2007 and Cymbalta in June 2008. Savella has been available in Europe and Asia for many years, and is licensed by Pierre Fabre and Cypress Bioscience, Inc. and Forest Laboratories, Inc.  A word of caution for people with IC: Dysuria (painful or difficult urination) is a possible side effect of Savella.  Also, the effectiveness of these newer classes in IC is still being explored.  Some patients report that these newer types of antidepressants, such as duloxetine (Cymbalta), escitalopram (Lexapro), bupropion (Wellbutrin), and sertraline (Zoloft), help their IC, while others report increased IC symptoms.
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Novel Overactive Bladder Treatment Receives Approval
2/28/2009

The FDA approved Watson Pharmaceutical’s GELNIQUE (oxybutynin chloride) Gel 10% for the treatment of overactive bladder (OAB) with symptoms of urge urinary incontinence, urgency, and frequency.  It is the first and only topical gel of its kind for OAB.  The GELNIQUE Gel’s active ingredient, oxybutinin, a type of anticholinergic/antispasmodic commonly found in oral OAB treatments, is delivered through the skin (transdermally), thus reducing some of the bothersome side effects (dry mouth, constipation) known to occur with the use of oral anticholinergics. GELNIQUE is a quick-drying, clear and colorless, fragrance-free hydroalcoholic gel that is applied once daily to the thigh, abdomen, upper arm, or shoulder and delivers a consistent dose of oxybutynin through the skin over a 24-hour period.  Because of GELNIQUE Gel’s high safety and tolerability during clinical studies, the medicine is now being considered first-line therapy for OAB.
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Japanese Urological Association Publishes IC Guideline
1/31/2009

Japanese Urological Association’s new IC Guidelines were recently published in the International Journal of Urology. Japanese Guidelines for Diagnosis and Treatment of Interstitial Cystitis by Homma, Ueda, Ito, Takei, and Tomoe is a very detailed, comprehensive document that you can access for free online.  Members of the Society of Interstitial Cystitis of Japan developed the guidelines, which are endorsed by the Japanese Urological Association and aimed both urologists and other women’s healthcare professionals. The English translation in this journal is a shortened version of the Japanese guideline.

The Japanese IC Guidelines propose eventually adopting the new term “hypersensitive bladder syndrome” to describe IC symptoms and include IC patients with and without pain. The guidelines define IC as:

  • lower urinary tract symptoms such as urinary frequency, bladder hypersensitivity, and/or bladder pain
  • bladder pathology proven endoscopically by Hunner’s ulcer and/or mucosal bleeding after over-distention
  • exclusion of confusable diseases such as infection, malignancy or calculi of the urinary tract

Because the IC definition includes abnormalities in the bladder, a diagnosis still requires cystoscopy and hydrodistention in Japan. Biopsy isn’t required, although it can help rule out cancer. But the authors were careful to recommend that biopsy should be done after hydrodistention to avoid bladder rupture. The guidelines call the potassium sensitivity test limited in diagnostic value because of the high rate of false negative and false positive results.


The American Urological Association (AUA) is currently working on IC guidelines for the United States with the goal of 2010 launch. ICA Executive Director Barbara Gordon and several of the ICA’s Medical Advisory Board are members of the AUA steering committee. We are hopeful that these various guidelines from different countries and professional associations will eventually lead to an international concensus regarding IC Guidelines.

Bladder Instillation Receives US Patent
8/29/2008

On August 19, Urigen Pharmaceuticals announced that the US Patent and Trademark Office issued the first patent for the use of URG101, an investigational, bladder instillation treatment for painful bladder syndrome/interstitial cystitis (PBS/IC). Patent number US 7,414,039 broadly covers the use of the URG101 product in the treatment of PBS/IC. The term of the patent extends into 2025.

URG101 is a bladder instillation (requires catheterization) that consists of alkalinized lidocaine (an anesthetic) and heparin (thought to help to repair/soothe the bladder lining). The ingredients in URG101 have been mixed together to form bladder instillations for several years. Urigen's URG101 combines these two active ingredients in a premixed formula, making it more convenient for IC health providers.
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New Medical Device for Pain Receives FDA Approval
7/31/2008
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 Eon Mini:
Fibromyalgia Medicine Receives FDA Approval -- Special considerations for IC patients
7/30/2008
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.