ICN Newsletter - February 2008 (View on the web)

1. IC/PBS Clinical Trial News
2. Motorcycle Ride to Raise IC Awareness
3. The Latest IC Videocasts
4. The Latest IC Research
5. Strategies for Saving $$ on Meds
6. Consumer Alerts
7. New Pilates DVD For Patients with Pelvic Pain
8. We're looking for physician recommendations
9. Self-Help Tip of the Month - Got the flu??
10. IC Diet Quick Tip: An IC Friendly Salad Dressing
11. New Support Groups & Support Opportunities
12. What's New in the ICN Shop

IC/PBS Clinical Trial News

NIDDK Terminates Cellcept Study

In a move that has caught the IC patient community by surprise, the NIDDK has terminated the clinical trial of CellCept for the treatment of refractory Interstitial Cystitis/Painful Bladder Syndrome. This action was taken upon the recommendation of the Data Safety Monitoring Board which reviewed interim data at their meeting on January 23, 2008. Early results found a "lack of efficacy of the drug vs. placebo" suggesting that it would be futile to continue the trial.

Cellcept created early excitement as a possible new therapy for IC, particularly for patients who had more severe IC. Unfortunately, it was learned that Cellcept contributed to a high rate of fetal defects in patients who became pregnant, resulting in the FDA safety alert issued in the past few months. Sadly, the data was not promising as well. More research results will be published shortly to discuss, in depth, what occurred.

The Brain and IC

(Jan 2008) Dr. Anthony J. Schaeffer (Northwestern University) is seeking participants for a small study titled "Brain Abnormalities in Urologic Pelvic Pain Syndrome (UPPS)." Funded by the NIH, patients will undergo a functional MRI, a variety of sensitivity testing (skin, wrists, lower abdoment) and computer testing to help determine if the brain plays a role in our pelvic pain. Patients must be able to visit the clinic in Chicago. For additional information, please contact D. Marko, RN at: (312) 695-3898 or by email at: d-marko@northwestern.edu.

Current Clinical Trials

There are a few services on the web that provide listings of current trials. Clinicaltrials.gov, our favorite, is a service sponsored by the National Institutes of Health. Centerwatch.com is an industry sponsored listing service.

IC Patient Embarks on National Motorcycle Ride to Raise Awareness

Brian Selby is a force to be reckoned with. He first contacted our office last August with a wild idea. He wondered if he could raise awareness for IC by making a 5,000 mile journey across Canada on a motorcycle. We were impressed. Anytime you find an IC patient with that level of commitment and creativity, you have to pay attention.

His dream will soon become a reality as he embarks upon a truly impressive effort to raise research funds for IC. The trip will begin in Victoria BC, with stops in Revelstoke BC, Calgary AB, Regina SK, Winnipeg MB, Thunder Bay ON, Sault Ste Marie ON, Ottawa ON, Fredericton NB. It will ending at St. Johns NL.

When asked why he'd do this during the worst time of year he said 'I'm trying to get your attention. I'm trying to shine a light on a little understood and under recognized health problem." You can follow his journey and blog reports on his website, ridingforacure.net.

The Latest IC Videocasts - Do You YouTube?

In the past year, a number of new videocasts on IC/PBS have been offered on the web by TV stations, pharmaceutical companies, advocacy groups and patients who are sharing their stories to help educate others about IC. If you have an IC related video to share or you've found a great one on the web, please e-mail us. We would like to feature patients sharing their stories, successes, concerns, funny stories, flare management tips and more. Got something to say??? Find a video camera and speak out!

WGCL Atlanta - 02/08

Featuring IC patient Kim Waltz and Dr. Denise Pecht, Atlanta. To view the video, please visit the station website and click on videocast link BELOW the picture.

KUAT Arizona Public Media - 09/07

Featuring IC patient Kim Barasso and Dr. Kalpesh Patel, KUAT produced a comprehensive video on painful bladder disorder. Click here to view

Dr. Robert Moldwin

The Honeymoon Cystitis Song

The Latest IC Research

Researchers in Turkey Produce Interesting KCL Study

Researchers in Turkey were able to convince all female employees in two textile factories to participate in a simple bladder study. They were each give the PUF questionnaire, an easy survey designed to assess bladder symptoms, and were then asked to volunteer for a potassium (KCL) sensitivity test. Eighty women agreed, including 58 women who scored high on the PUF test (meaning that they had active symptoms and were potential IC patients) and 22 who scored low (meaning that they had no few, if any, bladder symptoms). The low scorers served as the control group. 86.2% of the high scorers had a positive KCL test while only 9% of the control group did, thus suggesting that the PUF questionnaire did indeed help to identify patients who had an injured bladder wall.

Why is this helpful? Making a diagnosis of IC is challenging and, in fact, still under dispute. For the past several years, researchers around the world have been debating not only the name of IC but also how it is diagnosed. Many doctors in the USA worry that patients might be traumatized by having invasive testing (i.e. hydrodistention) and might not return to receive follow up care. Thus, finding an easier diagnostic method is vital for patient comfort and costs.

Created by C. Lowell Parsons MD (UC-San Diego), the PUF Questionnaire is, in our opinion, one of the biggest breakthroughs in the IC movement in years simply because it provides a quick, vital assessment that any doctor can use to help determine if pain is coming from the bladder. It's ideal use is in OB/GYN clinics or ER's. Yet, because PUF is not specific for IC (because no test right no is specific for IC), it has been criticized. Dr. Parsons also created the Potassium Sensitivity Test which tests the integrity of the bladder wall. Though it, too, isn't specific for IC, the assumption is that if a patient reacts to a potassium solution placed into their bladder, then their bladder wall is damaged thus suggesting that IC could be involved.

This study from Turkey suggests that these easy and less traumatic tools can be helpful in identifying potential IC patients. Certainly, the PUF questionnaire carries no risk. It's JUST a survey. And, if a patient scores highly on the test, it suggests that they should be worked up for bladder diseases. Thus, we say GOOD JOB. How, on earth, did they convince all of those women to participate. It boggles the mind!

Source: Sahinkanat T, et al. Prevalence of positive potassium sensitivity test which is an indicator of bladder epithelial permeability dysfunction in a fixed group of Turkish women. Urol Int. 2008;80(1):52-6.

Guided Imagery CD Proven To Reduce Frequency, Urgency and/or Pain

Since first introduced in late 2006, the Guided Imagery CD for Women with Pelvic Pain, created by Donna Carrico RN at Beaumont Hospital (Royal Oak, MI) has helped hundreds of women deal with pelvic pain and discomfort. A simple relaxation protocol, patients can use it at home to help calm the pelvic floor muscles, relax the pelvis and soothe their body and spirit.

A new research study produced from Michigan now shows that it can also reduce bladder symptoms such as frequency and urgency. In a study of 30 women, 45% of the women using the CD reported a moderate or marked improvement in their symptoms. Given the fact that this CD has no negative side effects, isn't it worth a try?

Source: Carrico D, et al. Guided Imagery For Women with Interstitial Cystitis: Results of a Prospective, Randomized Controlled Pilot Study. J Altern Complement Med. 2008 Jan 16

New Clues to the Missing GAG layer

Researchers at the University of Oklahoma are hard at work trying to understand how the structure the GAG layer, the protective layer of mucous in the bladder, is disrupted in the IC bladder. They have found that some of the essential proteoglycans in the bladder lining, perlecan and biglycan, that function as kind of an anchor in the GAG layer, are missing or found in abnormal quantities in the various IC bladder biopsies studied.

Why this occurs is still unknown. Some suggest that the anti-proliferative factor found in the urine of IC patients may be the cause or that there might be some interaction between the urothelium and the nerves. We do know that patients who suffer a spinal cord injury often experience a loss of the GAG layer and barrier function. Could this be at play for the general IC patient who has no symptoms of spinal cord injury or nerve dysfunction?? We just don't know.

Source: Hauser et al. Abnormal expression of differentiation related proteins and proteoglycan core proteins in the urothelium of patients with interstitial cystitis - J Urol. 2008 Feb;179(2):764-9.

Do Men with Chronic Prostatitis/Chronic Pelvic Pain Syndrome Experience Muscle Tenderness??

Which comes first... the chicken or the egg... or, in the case of chronic pelvic pain syndrome, bladder symptoms or muscle tension. This question continues to be one of the critical puzzles of pelvic pain. Not surprisingly and like so many women diagnosed with IC and pelvic floor dysfunction, research is now confirming that men can experience extreme muscle discomfort and tenderness as well. Research conducted by the Chronic Prostatitis Collaborative Research Network Study Group found that 51% of men diagnosed with CPPS experienced muscle tenderness, most often at the prostate, the external and internal pelvic floor and subrapubic area. Interestingly, 25% had pain at just one site, while 11% had pain at two sites and 6% had pain at 3 sites.

Source: Muscle Tenderness in Men With Chronic Prostatitis/Chronic Pelvic Pain Syndrome: The Chronic Prostatitis Cohort Study

Strategies For Saving $$ on Meds

With the economy so uncertain, we're all tightening our belts and cutting costs. One IC patient contacted our office last week reporting that it would cost him more than $530 a month for a new prescription of Elmiron. He simply couldn't afford it. Luckily, he wasn't aware that Johnson & Johnson has a Patient Assistance Program that can provide Elmiron at no cost to qualified patients.

If you're looking for tips on how to save money with your drug costs, please visit our newly redesigned ICN Drug Assistance Program Center.

Consumer Alerts

Duragesic Patch (Fentanyl) Leakage

February 12, 2008 - PriCara hare recalled all lots of 25 microgram/hour (mcg/hr) DURAGESIC® (fentanyl transdermal system) CII patches sold by PriCara in the United States and all 25 mcg/hr fentanyl patches sold by Sandoz Inc. in the United States are being voluntarily recalled because of cuts found in the patch which have allowed the medication to leak. Exposure to fentanyl gel may lead to serious adverse events, including respiratory depression and possible overdose, which may be fatal. Anyone who comes in contact with fentanyl gel should thoroughly rinse exposed skin with large amounts of water only; do not use soap. Immediately dispose of affected patches with cut edges by flushing them down the toilet, using caution not to handle them directly. Patches with a cut edge that have leaked gel will not provide effective pain relief. Read the FDA Medwatch Alert.

Icy Hot Heat Therapy Products Cause Burns

Chattem, Inc. and FDA informed consumers and healthcare professionals of a voluntary nationwide recall of its Icy Hot Heat Therapy products, including consumer "samples" that were included on a limited promotional basis in cartons of its 3 oz Aspercreme product. The products were recalled because of consumer reports of first, second and third degree burns as well as skin irritation. Consumers who have the Icy Hot Heat Therapy products under this recall should immediately stop using the products, discard them, and /or return them to the manufacturer. Read the FDA MedWatch Alert

New Pilates DVD For Patients with Pelvic Pain

When Jenny L. Buttaccio, a licensed occupational therapist and certified pilates instructor, developed bladder pain and IC in 2005, she learned, first hand, just how difficult it can be to exercise. Undaunted, she adapted and created a new series of pilates inspired exercises for others who suffer from chronic pelvic pain. Why?? Jenny said "There are millions of people with pelvic pain disorders but it's nearly impossible for a person who suffers with pelvic pain to find a workout video that tones and conditions... I mean an actual workout... so I made one for us."

Because many patients can't perform long, intense workouts, this DVD has shorter segments which allows patients to personalize their workout according to their capabilities. In addition to a 47 minute complete workout, it also offers targeted workouts for warming up, arms, abs & back and legs. Thus you can create your own workout based upon your unique needs! The bonus workout, the Rough Day Revitalizer, is a great way to relax after a long, difficult day.

Available for $29.99 from the ICN Shop!

We're Looking For Medical Care Provider Recommendations

In january, we launched our new searchable database of medical care providers who work with IC patients. It now offers listings for IC research centers, urologists, Ob-Gyns, physical therapists, pain centers, dietitions and counselors, many of whom have been suggested to us by their patients.

But we've also purged many old listings. Thus, we're looking for suggestions. Who better to tell us what medical care providers are the most compassionate in working with IC patients? You, the IC patient. We'd like your suggestions. Please visit our new database and see if you're doctor listed. If not, please use our recommendation form. We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care and share new IC resources with them.

Click here to search our database

Click here for our doctor recommendation form

Self-Help Tip of the Month: Got the Flu?

(by Jill Osborne, ICN President & Founder)

If you've wondered why you haven't heard from us in the past weeks, the ICN staff and families have been decimated by the respiratory flu currently wreaking havoc across Northern California and the USA. With high fevers, intense coughing, chills, sore throats, one ambulance ride for my 85 year old father and three visits to the ER in the past three weeks, my family is exhausted. Our doctors say that it's the "worst" flu in decades (reminiscent of the Asian flu in the 1950's) and is highly contagious. It's not unusual for entire families to become ill at the same time. Yikes!

ICer's with the flu have a special challenge. Some of the traditional products for colds and the flu can irritate our bladders. Since there are so many others now suffering with symptoms, I thought we should share strategies that are more bladder friendly.

For my sore throat, I used Chloraseptic throat spray and lozenges, along with Ricola cherry honey lozenges. These didn't bother my bladder at all. For congestion at night, I used Vicks Vaporub. To soothe my irritated throat and calm the coughing, I used prescription cough syrup, mentholyptus cough drops and countless mugs hot water, diluted apple juice and honey. My doctor was also adamant about drinking plenty of fluids and getting lots of rest. I was at home for two weeks doing just that. Not fun!

But, we all have individual tolerances to various products and foods. What worked for me might not work for you and/or could flare your bladder. I asked IC patients in the ICN Support Forum to share their best strategies for dealing with colds and the flu. Here are some of their responses that might help.

Several patients reported that the product AIRBORNE has helped them elude the flu. Muxerr012 said "The ONLY thing that has spared me (I believe) is taking my Airborne. I have to take lots of Prelief with it because of the high Vit C count in it. But I do swear by this stuff!! It was the #1 retail product sold in American history!! That says something to me. It is worth the pain of a mild flare in order to keep from getting this flu." Airborne does have a large quantity of Vitamin C that can irritate some IC bladders. Using Prelief to help counteract that was clever.

Got the flu? MUCINEX was mentioned several times. Forum moderator LeeLee offered "I used Musinex for the conjestion and the Musinex sinus spray. Both worked great and did not hurt my bladder. I gargled with warm salt water for my sore throat and drank hot chicken broth. It was all I wanted and just made me feel better." A few patients reported Claritin or Benadryl helped reduce congestion, while another went a natural, herbal route by using Naturade Herbal Expec (herbal expectorant) and Sambucol Black Elderberry Original Syrup from her health food store. (I've never heard of these last two products. If you're considering herbal products, please review the ingredient list carefully to verify that you are not sensitive to any of the ingredients.)

Because a virus apparently thrives in cold, dry conditions, using a steamer or vaporizer can help. Many steamers come with adaptors that allow you to breathe in a soothing scent, like Vicks. IC'er BlendNo4 found success using inhalation "at least 3 times a day for 5-10 minutes" with hot water, salt, thyme and/or chamomile.

IC'er Kadi has several favorite strategies. She takes hot showers with a Sudacare Shower Soother on the floor, a fizzy tablet that releases Vicks type vapors when the hot water hits it. She rinses her nose out with Simply Saline, uses Vicks "Baby Rub" which is milder than regular Vicks & more soothing. BreatheRight nasal strips can help open up nasal passages while hot pear juice with honey calms her throat.

Fair warning. Many cold products contain pseudoephedrine which can bother the bladder and, for some of us, trigger a rapid or irregular heart rate.

Of course, the most important resource of all is your physician. If you're struggling with symptoms, please call your doctor and ask for their advice. This current flu is so virulent that it is causing pneumonia even in young, strong patients as well as seniors and children.

If you have an IC Friendly cold/flu strategy to share, please post it in the ICN Support Forum where other patients may benefit from your suggestion. Let's hope that Spring soon appears!

IC Diet Quick Tip - An IC Friendly Salad Dressing

IC patient Cheryl (Oregon) called our office this week to rave about the Cottage Cheese Salad Dressing she found in our on-line IC Chef Cookbook. She said "I love this dressing. I use it on salad, red potatoes and steamed veggies. It also works great as a veggie dip and is easily adaptable. It's easy to thicken or thin depending upon what you use it for. It's great!." We agree. This recipe was submitted to us by ICN Support Forum Manager Donna years ago and it deserves a new mention for our new subscribers. Do you have an IC friendly recipe to share? We now have a support forum where you can post your recipes directly!

Cottage Cheese Salad Dressing

Ingredients:

* 1 cup cottage cheese

* 1 to 2 tbsp olive oil

* Fresh herbs to taste (I use fresh basil and dried dill weed)

* Salt (optional)

Pour into blender. Blend until smooth. Serve with finely shredded lettuce.

New IC Support Groups & Support Opportunities

Can you imagine how great it would feel to walk into a room filled with others who understand exactly what you're going through?? Having IC is difficult at times... and doing it alone is unnecessary. Why recreate the wheel and try to figure this out on your own when there are dozens of independent IC groups around the country who are waiting to help you! IC Support Groups will help you learn more about IC, about resources in your area and, most of all, can help you make some great new friends! Don't suffer in silence at home, alone. If there is a group near you, call the group leader and introduce yourself! Click here to find a support group near you!

ICN Live Support Chat Schedule

The ICN is proud of our role in launching the first bladder support groups EVER on the web back in 1994. ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders, Leslie Grinnell & Kathi Heintz. Join us for a typical support group meeting live from the comfort of your home. What could be easier?? Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!

When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST

Where: ICN Chat Room

What's New In The ICN Mail Order Center

http://www.icnsales.com - (707)433-0413

Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive website, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!

Azo Test Urine Test Strips

Are you confused about whether you're having an IC flare or a UTI? This new urine test kit checks for Nitrite AND Leukocytes (white blood cells) in the urine, the same UTI test pads that most doctors use. Easy to use and read in just 2 minutes! Read more!

Alkalive pH Urine Test Strips

Manufactured by pH Ion, this new, more accurate, test kit checks the pH of urine. This will allow you to test the acid or alkaline level of your urine. We know, for example, that urine that is highly acidic will irritate the bladder. We also know that urine that is very alkaline (i.e. bleachlike), is also very damaging and irritating. This test works by measuring the concentration of hydrogen ions in urine. A score lower than 7 indicates that the urine is more acid. Higher than 7 indicates that urine is more alkaline. In a pH balanced body, urine is slightly acid in the morning with a pH range of 6.5 to 7. By evening, it generally becomes more alkaline, pH 7.5-8 as your body digests food and releases electrolytes.

Includes a whopping 80 test strips! Read more!

Klean Kanteen Stainless Steel Water Bottles

Who wants to drink their daily water from those plastic bottles that taste like you are eating part of the bottle too? While we are doing our best to hydrate ourselves, some of us know that the plastic bottles of water we get at the store leach not only the taste of plastic, but plastic chemicals into the water inside them.

Let's thank the folks at KLEAN KANTEEN for developing the best stainless steel water bottle on the market! Here is a safe alternative to plastic and lined metal containers that is made from high quality food grade stainless steel. This non-leaching and toxin-free stainless steel has NO inner lining and is so clean tasting. These bottles are durable, lightweight reusable and 100% recyclable!! Read more!

Manno Max D-Mannose Powder and (New!) Tablets

There is no doubt that interstitial cystitis patients can develop the occasional bladder infection and, for an unlucky few, repeated infections that are routinely cultured out for E-COLI. Having a UTI on top of a bladder already struggling with IC can create extreme discomfort and pain. What are we to do?? Since IC patients can't use cranberry juice because of its harsh effects to the bladder, D-Mannose is a more bladder friendly option. D-Mannose is the active ingredient in cranberry and blueberry that helps reduce the ability of E-COLI to cling to the bladder wall. A simple sugar, it is one of the easiest strategies that a patient can try. We've changed distributors and are delighted to introduce Manno Max D-Mannose, both in powder and tablet form! Read more!

(From ICN Founder Jill - I've been a D-Mannose critic ever since another company had the audacity to suggest that it could be used to prevent the onset of IC. I still believe that's hogwash, particularly for patients who may have a genetic predisposition for IC. However, I believe that D-Mannose IS a viable option for patients struggling with recurring diagnosed UTI's, particularly those that are E-coli based.)

Go Green With Glad Rags Organic Flannel Pads (Day & Night)

Women with IC often struggle with irritation at the urethra and on the vulva making the use various menstral pads painful. This is particularly true for patients with vulvodynia. A great option are the organic, cotton flannel pads known as "glad rags." They are soft, washable and more soothing to tender, irritated tissues. The smaller day pads are designed to snap around smaller underwear, they are great for petite frames or days when you want a little protection. The night pads are longer, wider and more absorbant. Lasting 5+ years, GladRags are easy on the pocket book, while also using minimal resources. Read more!