A New Interstitial Cystitis Diet Has Been Released

Interstitial Cystitis patients everywhere can now check out the newly revised Interstitial Cystitis diet by visiting this link on the IC Network.  The IC Diet Committee spent six months creating a new and updated list of foods IC patients should be eating and foods that need to be avoided. The committee included Julie Beyer RD (author of the Confident Choices books), Bev Laumann (author of A Taste of the Good Life: A Cookbook for an IC diet), Barbara Gordon RD (Executive Director of the ICA), diet IC researcher Barbara Shorter RD (Faculty member at Long Island University) and Jill Osborne, founder of the IC Network.

This is what Jill Osborne had to say about the new diet list:

With three registered dietitians on the team, two IC cookbook authors and key leaders from the two largest IC organizations in the USA, we were determined to create the “ultimate” diet list that blended both anecdotal patient reports with the solid, valuable data gathered from the IC and diet research studies conducted at Long Island University. This new list replaces ALL previously released lists. It is much more comprehensive than previous lists, recategorizes several foods into more appropriate categories (i.e. many cheeses have been moved to the middle “Try It” column) AND provides a list of foods that we think would be soothing during your worst IC flares.

Please click the link below to view the entire guide!  You can print it out, take it your doctor also to view.

2009 IC/PBS Food List

Pelvic Pain Seminar to Be Held In New Jersey

On November 7th & 8th, there will be an Orthopedic Management of Pelvic Pain Seminar in Englewood, New Jersey. Orthopedic Management of Pelvic Pain is a lab-based continuing education seminar designed for the clinician that has practical experience in the evaluation and treatment of pelvic pain conditions. it will explore, in depth, the role of sensitization, referred pain patterns and neurological convergence in pelvic pain patients, introducing a new treatment strategy that can be easily melded into your current strategy.

Both the patient and clinician will benefit from the immediate & measurable reduction in the patient’s level of pain, muscle spasms and dysfunction.

When: November 7th & 8th, 2009

Where: 177 North Dean Street, Suite 302. Englewood, NJ 07631

Course cost: Free introductory offer

CEUs: to be awarded to those that complete the two day course

For additional information on the course and/or to register to participate, please email: peter@philipphysicaltherapy.com.

Sign Petition To Protect Our Rights to Pain Medications!

Please read the following press release from the Interstitial Cystitis Association and click on the link where indicated to sign the petition.  We need our pain medications and they should not be taken from us!   Instead of taking these needed pain medications from patients why not educate patients and physicians on how to better use them and prescribe them? 

The U.S. Food and Drug Administration (FDA) is considering advice from its Advisory Committee that would eliminate all prescription acetaminophen combination medications (like Vicodin and Percocet).  In addition, they are recommending taking the 500 mg (extra strength) dose of acetaminophen (the medicine in Tylenol) off store shelves and making it available by prescription only.  These changes could negatively affect people suffering from pain who rely on these medicines every day. Visit the American Pain Foundation website for complete information on the proposed acetaminophen regulations.

The FDA must consider all comments received by September 30, 2009 that are submitted to the official docket for this decision.  Please sign the petition letter by September 27, 2009 and the American Pain Foundation will submit the petition to the FDA.

Act Now and Sign the Petition! 

Interstitial Cystitis Clinical Trial Recruiting

A new clinical trial for Interstitial Cystitis studying the effectiveness of the new product, Uracyst, for its safety and effectiveness in IC/PBS patients is currently recruiting patients.   The clinical trial (#NCT00919113) inclusion and exclusion criteria can be found at the Clinical Trials.gov website.   According to the ICA website: 

Uracyst is a bladder instillation product.  The active ingredient in Uracyst is sterile sodium chondroitin sulphate, a substance found naturally in the body-including the bladder.  The study aims to evaluate the effectiveness of Uracyst by comparing the effects of this product when compared to placebo.  Participation in this trial will involve one initial screening visit 8 weekly instillation visits, and 4 additional follow-up visits.

Approximately 20 sites in 14 states are now actively recruiting women who are at least 18 years of age and have been diagnosed with IC/PBS to take part in this study.  Subjects who take part in this trial will receive study medication and all study-related procedures free of charge.

Liposome Patient Trial Shows Promise for New IC Treatment

The Interstitial Cystitis Association has released the news that the first clinical trial of Liposomes for Interstitial Cystitis that was conducted on actual patients has been published.  According to the ICA:

Michael Chancellor, MD at the Oakland University William Beaumont School of Medicine and Beaumont Hospital in Royal Oak, Michigan was the first to see liposomes’ potential as carriers of helpful medicine into the bladders of IC patients.  But then, he and his team saw that liposomes alone could work just as well as liposomes carrying a painkiller related to hot peppers.  

Now, Yao-Chi Chuang, MD, and colleagues at the Chang Gung University College of Medicine, Kaohsiung, Taiwan have treated IC patients with liposome instillations, in a physician initiated trial approved by the Taiwan’s health regulatory agency and hospital IRB, checking safety and comparing the results with a standard therapy.  Over four weeks of treatment, the patients who got instillations once a week had no problems with it and did better than those who got oral pentosan polysulfate (Elmiron).  Both groups had their frequency and nighttime voiding go down, but those who got liposomes also had significant decreases in pain, urgency, and symptom scores.  Of course, larger, longer, and controlled clinical trials have to be done before this treatment can be approved for marketing in the United States.

The research team is also continuing animal research with other medications that carry liposomes. 

They had researched a marijuana-like medication that attached mainly to cannabinoid receptor 1.  But now, cannabinoid receptor 2 looks more promising as a bladder target.  Although compounds aimed at this receptor are also being developed, it may be some time before they are studied as instillations with liposomes.  Recently, Dr. Chancellor and associates began studying liposomes carrying botulinum toxin A (Botox) as a potentially helpful treatment for IC.  Some of their just-published animal research shows that empty liposomes (LP-08, Lipella Pharmaceutical, Inc.) also have potential to work better than bladder instillations of DMSO or Elmiron.

Abuse of Ketamine Can Trigger Hunner’s Ulcers

I was surprised to read about Ketamine abuse in the IC Network newsletter.  Ketamine is also known as the “date rape drug” and has quickly outgrown heroin and methamphetamine as the drug of choice due to its low cost and easy accessibility in many parts of the world. It is commonly used at RAVE parties and is known as a “Club Drug,” often mixed with ecstasy.   According to the IC Network newsletter:

When new IC support group leader Shereen convened her first meeting in Kuala Lumpur earlier this summer, she was stunned to find the room filled not with typical IC patients, but with young, teenage ketamine addicts. She may be the first IC support group leader to see this tragedy and the tremendous toll it appears to be taking on young adults around the world.

Using and abusing Ketamine has caused Ketamine bladder syndrome to develop and it is a newly reported side effect of the drug.  Over the past two years, physicians in Asia, Europe and Canada have reported that they treated young Ketamine abusers who have developed potentially irreversible bladder damge.

In 2007, clinicians from Toronto (Canada) described nine patients who were daily ketamine users and who presented with severe dysuria, frequency, urgency and gross hematuria. At cystoscopy, all patients had severe ulcerative cystitis. Clinicians in Hong Kong (China) shared a similar presentation of ten street ketamine users diagnosed with ulcerative cystitis .

In 2008, Drs. Colbunders and Van Erps (Belgium) described the case of a 20 year old man who presented with a seven month history of urinary frequency, nocturia, urgency and pain during urination, as well as episodes of severe bleeding from the bladder shortly after beginning recreational ketamine use. The researchers conclude “We expect that in the future an increasing number of cases of cystitis caused by ketamine use will be seen in young adults.”

In December 2008, Hong Kong researchers released information from the largest study that has been done to date on Ketamine abuse.  The study results revealed that 59 Ketamine use study participants had moderate to severe lower urinary tract symptoms, drastically reduced bladder capacity and increased frequency.  Out of these 59 Ketamine users, 71% had “bladder mucosal inflammation similar to IC.”

Ketamine has been available in the United States for more than 10 years and it can be prescribed to patients with severe neuropathic pain or those who need “end of life” pain control.  The IC Network says they don’t want to discourage the value that Ketamine can provide to the necessary patients that need it.

When used properly and under supervision, ketamine can be quite helpful in reducing pain. Thus, we don’t want to discourage its use for pain control, but we do want to raise awareness about its misuse.

For more information on Ketamine Bladder Syndrome, please visit the Ketamine Bladder Syndrome website.

Free Interstitial Cystitis Event in Atlanta

I received an email the other day from the Interstitial Cystitis Association, asking me if I would post an upcoming IC event that will be held in Atlanta, GA on Sunday, August 23rd.  Please read over the event information below and sign up by August 18th to register at http://www.ichelp.org.   If you are unable to attend the event in person but would like to tune in and participate, ICA will be airing a live webcast of the presentation. This CDC-funded event offers patients, caregivers, and healthcare providers a chance to meet face-to-face with leaders in the field to learn more about Interstitial Cystitis.

Where: Renaissance Waverly Hotel, 2450 Galleria Parkway, Atlanta, Georgia

Seating is limited. Registration is free

To register, visit www.ichelp.org and RSVP by Tuesday, August 18. For questions about the event, contact ICAmail@ichelp.org or 800-435-7422.

If you are unable to attend the event in person but would like to tune in and participate, ICA will be airing a live webcast of the presentation. Sign up today at www.ichelp.org.

Self parking is complimentary. Valet parking is available at the hotel for a $10 charge.

About Interstitial Cystitis Association

The Interstitial Cystitis Association (ICA) is the only non-profit health association solely dedicated to improving the quality of healthcare and lives of people living with IC.  The ICA provides advocacy, research funding, and education to ensure early diagnosis and optimal care with dignity for people affected by IC. Conquering IC. Changing Lives.

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