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Summer 08 Ezine

Feature Story - AUA Round-Up 2008

(Author: Stacey Shannon)

AUA 2008The American Urological Association held its annual scientific meeting from May 17 to 22 in Orlando, Fla.  Urologists from around the globe convened on the city to discuss their latest research in urology, including IC.  The debate over whether to change the name from IC to Painful Bladder Syndrome or Bladder Pain Syndrome continued, but other research was discussed more predominantly.

Why there are more female ICers

With estimates that 90 percent of IC patients are female, researchers continue to explore reasons why so many more women present with IC than their male counterparts. A research team in Japan took on this topic in a study of male and female mice.  They determined that females have more acid-sensing ion channels than males.  As such, females are more sensitive to acetic acid and feel its effect on their bladders more than men.  The study asserted that acid-sensing ion channels play a role in IC and should be looked at further for advancement in diagnostics and treatment.

Another research team, this one in Madison, Wis., tackled this topic by looking at estrogen receptors.  They found that one specific type of estrogen receptor influences bladder function.  In comparing male and female mice with the same sort of bladder issues, the female mice ranked much higher on the pain and frequency scales than their male counterparts.  The researchers concluded that this one estrogen receptor impacts pain perception associated with IC symptoms.  That’s not to say that men don’t have IC or suffer from its symptoms.  This preliminary research may help explain the differences in how patients perceive pain associated with IC.

Hydrodistension may not be the only option

Cystoscopy with hydrodistension has long been the preference of urologists in looking at bladders with IC.  Patients have endured being anesthetized for such procedures for years.  However, researchers in Japan and Pennsylvania have collaborated in a study to show that a flexible cystoscopy works just as well for diagnosing IC patients. They said the flexible cystoscope, in conjunction with what is called a narrow band imaging system, allows them to see Hunner’s ulcers and other IC indicators just as easily as with a rigid cystoscope. The good news for patients is that the flexible cystoscopy doesn’t require a hydrodistension and is a much less invasive diagnostic tool with fewer complications and repercussions. “Since it does not require hydrodistension, IC diagnosis can be made simply, less invasively and at lower cost in outpatients,” the researchers said.  This new research is not widely accepted, yet, so patients shouldn’t be surprised if their local urologist isn’t utilizing the flexible cystoscope, yet.  With only 52 patients involved in this study, further research will most likely be conducted in a wider group to make sure this modified diagnostic tool is effective.

(Read The Full Report!)

 

Consumer Alerts

FDA

Electronic Medical Devices

The FDA has notified the medical community that it is tracking a small number of adverse events in patients who have an implanted electrical device (i.e. pacemakers, defibrillators, neurostimulators, drug infusion pumps) after undergoing a cat (CT) scan. Serious complications include unintended “shocks” (i.e., stimuli) from neurostimulators, malfunctions of insulin infusion pumps and transient changes in pacemaker output pulse rate. Read more!

Morphine Sulfate - 60mg Tablets

Ethex Corporation notified healthcare professionals of a voluntary recall of a single lot of morphine sulfate 60 mg extended release tablets (Lot No. 91762) due to a report of a tablet with twice the appropriate thickness. Oversized tablets may contain as much as two times the labeled level of active morphine sulfate. Read more!

Tendon Rupture High Risk Of Cipro and Levaquin

On July 8th, the FDA issued its most severe safety warning to the manufacturers of Cipro and Levaquin after revealing that hundreds of reports of tendon ruptures occurred after beginning this type of antibiotic. Patients reported hearing a snap or pop of tendons in the knee, shoulder, hands and biceps soon after beginning treatment. Read more!

Patients Unaware of Link Between Bladder Cancer and Smoking

(Editors Note: To be a smoker with IC is to risk not only severe bladder irritation but also a far worse medical condition, bladder cancer. Thus, once a year, we post a reminder about smoking and IC. Nuff said.)

Even though cigarette smoking accounts for up to half of all bladder cancer cases, few people are aware of the connection – including more than three-quarters of patients who have bladder cancer, according to a new study from the University of Michigan Comprehensive Cancer Center. This knowledge vacuum suggests that urologists and other physicians need to do a much better job of telling patients about the risk of smoking and encourage them to quit, the study authors say. “The general public understands that cigarette smoking can lead to lung cancer, but very few people understand that it also can lead to bladder cancer,” says senior author James E. Montie, M.D., Valassis Professor of Urologic Oncology at the U-M Health System. Read More

Conference Reports

European Society For the Study of IC/PBS (ESSIC)

ESSICEstablished a few years ago, the European Society For the Study of IC has become a “think tank” for researchers and clinicians in Europe who are passionate about studying IC/PBS/BPS. At this years meeting, more than 100 professionals gathered in Rome to discuss theories, treatments and research studies.

Antecedent non-bladder syndromes in a case control study of interstitial cystitis/painful bladder syndrome

Jack Warren (Univ. of Md, USA) and colleagues have released the results of a study which will have some IC patients saying “I thought so.” Their goal was to determine if IC occurred after patients developed other similar syndromes. Their study determined that 78% of participating IC patients were identified as having multiple syndromes, particularly fibromyalgia, chronic fatigue syndrome, sicca syndrome and IBS. Migraines, chronic pelvic pain, depression and allergy were also related, though to a lesser degree. They found that a total of eleven syndromes were more often diagnosed in IC/PBS patients and that most syndromes appeared in clusters (i.e. that patients struggled with more than just one condition at a time). These results support the theory that, for some patients, IC may be part of a systemic (body wide) syndrome as opposed to just affecting the bladder.

Preliminary data concerning pain and quality of life in patients with BPS/IC

Researchers J. Nordling and B. Richter (Herlev Univ. Hospital, Denmark) studied 153 IC patients over a 40 year period (1967-2007) to review the longitudinal course of the disease. The results are encouraging because the vast majority of patients (52%) felt that their condition and quality of life had improved over time. 17% of patients felt unchanged and 19% felt worse. The researchers concluded that pain intensity seemed to weaken through the course of the disease. They also studied the effect of several treatments but lacked enough data to make strong conclusions. However, they did see tendencies with instillations of DMSO, Cystistat, and oral treatment with amitriptyline, pregabalin, Singulair, antihistamines and steroids that appeared to improve improved disease condition in a third to a half of treated persons.

Read more research highlights!

ICIICI 2008 Highlights

The International Consultation on Incontinence now has several committees dedicated to various urological diseases, including one dedicated to IC/PBS/BPS chaired by Dr. Phil Hanno. Read the summary of their July 2008 committee meeting highlights here! (Urotoday requires that you create a free account to read their articles)

Update on CystaQ

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CystaQ Helps Patient Stay Working - Farr Labs now offering a free bottle of product!

CystaQFor patients who are interested in going the "natural route" in treating their symptoms, your goal should be to look for a product that has research that proves that their product can help reduce your bladder symptoms. Farr Laboratories, the makers of CystaQ, ProstaQ, and Qurol was the first supplement company to answer this call. Unlike other "mass market" supplement companies, they put their money where their mouth was by sponsoring two different studies (at UCLA and the Cleveland Clinic) to determine if their product line could work. The answer was a resounding yes. Not only that, they also found that their products helped to reduce the symptoms of vulvodynia. Patients agree.

Mark A from Poughkeepsie offered "I really noticed the extent to which IC was ruining my life when my boss asked me to resign from my job of 4 years. I had been spending more time in the restroom than in my office, and I was missing important meetings because I was too embarrassed to attend, then have to run out every 20 minutes. I was constantly inventing excuses to leave during the day for countless doctor appointments and my boss and my staff were fed up. Although I had been on medications that helped control the pain, CystaQ was the first product I tried that actually helped with both the pain and the frequency of urination. After several weeks, my job performance improved (I had been trying to hang on to my position) because I could go for over an hour without running to the restroom. CystaQ has truly given me my life back and I’m grateful every day."

A.M. said "After suffering from Interstitial Cystitis for half my life, I’ve tried dozens of medications. I was becoming hopeless and was contemplating surgery, even though the thought of a difficult recovery period and huge hospital bill terrified me, especially since it wasn’t guaranteed that my urethral pain and urgency would go away. “Then my doctor heard about CystaQ and recommended it to me. Desperate, I tried it because it was pretty much the only thing I hadn’t tried yet. To my amazement, it has worked very well. Although I am not one-hundred percent better, my pain and frequency have diminished to where most days I feel like I am a normal person. I am so thankful I tried CystaQ before going through the long ordeal of bladder surgery!

E. S. said "I have been suffering from vulvodynia as well as IC for 6 years. CystaQ is the first product I’ve tried that has allowed me to have virtually pain-free sex with my husband. It’s helped our marriage immensely and I can’t think the makers of CystaQ enough!"

One of the key researchers, Dan Shoskes MD (Cleveland Clinic, Cleveland OH) reviewed the research data for quercetin, the key ingredient found in CystaQ and ProstaQ, in his new book Chronic Prostatitis/Chronic Pelvic Pain Syndrome (Humana Press, 2008). "In a preliminary small open-label study, 500mgs of quercetin administered twice daily gave significant symptomatic improvement to most patients. This was followed by a prospective, doubled blind placebo controlled trial of 500mgs of quercetin administered twice daily for four weeks. " He confirmed that "20% of patients taking the placebo and 67% of the patients taking quercetin had an improvement of symptoms." He continued "A third group of patients received ProstaQ, 82% of whom showed a significant improvement of symptoms." ProstaQ and CystaQ use the same active ingredients of quercetin with bromelain and papain.

If you are considering trying a supplement, Farr Labs is offering a one time free bottle of product (60 capsules) of CystaQ. You'll just pay for shipping and handling of $5.95.

CLICK HERE TO ORDER YOUR FREE SAMPLE

Click here to read more about CystaQ

Click here to review the CystaQ research studies

 

The Latest IC Research

This Spring, we've had dozens of new studies released on IC/PBS/BPS/CPPS. Most, however, are very academic in nature and not easily understood. Thus, we're sharing highlights of those studies that we think you will find encouraging or directly relevant to your daily life. If you'd like to see all of the studies in depth and/or read their abstracts, you can do so using PubMed, the on-line National Library of Medicine service. It's free and very easy to use.

Physical Therapy Study Shows Effectiveness in Reducing Pelvic Pain

The first results from the NIDDK funded study by Urological  Pelvic Pain Collaborative Research Network (UPPCRN) were presented at AUA 2008 by Dr. Ken Peters (Beaumont Hospital, Royal Oak MI) showing that manual “hands on” physical therapy (MPT) can help reduce chronic pelvic pain in patients who have muscle tenderness. A total of 47 patients (23 men with chronic pelvic pain syndrome/non bacterial prostatitis, 24 women with interstitial cystitis) participated from six research centers around the USA. Half randomly received MPT while the other have received a body wide therapeutic massage. Ten weekly one hour sessions were provided. The results were solid. 57% of patients receiving pelvic floor physical therapy had improvement while only 21% responded to the general massage. Interestingly, no women responded to the general massage, while 45% of the men did respond. Yes, Virginia, if the pelvic floor muscles are tight, it does makes sense to provide some therapy for them.

Source: AUA 2008 Podium Session

New Bladder Instillation of Sodium Hyaluronate AND Chondroitin Sulfate Shows Success in Early Trials

Both hyaluronic acid (aka sodium hyaluronate) and chondroitin sulfate have been used, individually, as bladder instillations in Europe and Canada. In fact, they've often been seen as competing treatments. Researchers in Italy, however, thought that the combination of the two ingredients would make a more effective bladder instillation and/or replacement of the GAG layer. 27 women were studied from two research centers. Each patient received a weekly treatment for 12 weeks and then twice a month for six months. The results were promising, showing not only a decrease in frequency and an increase in urine volume and overall improvement in symptoms and discomfort. The researchers concluded that "intravesical hyaluronic acid plus chondroitin sulphate appears to be a safe and efficacious method of treatment in IC/PBS." In order to confirm these initial encouraging results, further controlled, randomized studies are necessary with a greater number of patients and a longer follow-up.

Source: Porru D. et al. Results of Endovesical Hyaluronic Acid/Chondroitin Sulfate in the Treatment of Interstitial Cystitis/Painful Bladder Syndrome. Rev Recent Clin Trials. 2008 May;3(2):126-9.

UTI Found To Be A Trigger For A Minority of Patients

Researchers at the University of Maryland were interested in determining if a bladder infection (UTI) was present at the onset of IC for newly symptomatic patients. Of the 314 patients studied, evidence of a UTI was found in 18 to 36% of women thus establishing that a small proportion of patients may have had a UTI prior to the onset of their bladder symptoms. This does NOT support those who believe that IC is bacterial in nature as the vast majority of urine cultures of IC patients are negative but it does indicate that, for some patients, the damage which occurs after a bladder infection may, in fact, remain thus contributing to IC.

Source: Warren JW et al. Urinary tract infection and inflammation at onset of interstitial cystitis/painful bladder syndrome. Urology. 2008 Jun;71(6):1085-90.

IC/PBS Clinical Trial News

New Pain Study in New London CT Seeking Participants

There is a medical need to address men and women suffering with IC/PBS pain. An investigational medication is thought to help modulate pain responses, especially in chronic pain conditions. The aim of this study is to determine whether men and women 18 years or older who have IC/PBS will benefit from treatment with investigational medication single IV dose compared to placebo. Patients will participate in the trial for approximately 18 weeks.

Coastal Connecticut Research, a clinical research site in New London, is currently looking for men and women at least 18 years of age who have been diagnosed with IC/PBS. Qualified Participants will receive medical examinations, tests and the investigational drug at no cost and may be compensated for time and travel. All test results can be shared with their primary care provider or urologist. This research study is now taking place in New London, CT and other cities across the United States. For more information call (860) 443-4567.�

More information on IC Clinical Trials can be found in the ICN Clinical Trial & Resource Center

Clinical Trial New London CT

 

New Resources On Our Web site

We've spent this year doing a massive reorganization of our web site, including the addition of several new sections for the web site that we hope will help you better manage your IC, including:

New Diet & IC Resources & Recipe Exchange

Find an International IC/PBS OrganizationICN World Center

Find IC patient organizations and/or physician contacts in Europe, Asia, Africa, Australia, North and South America in the ICN World Center.

 

Hot Topics In The ICN Forum

Dextroamphetamine Sulfate Discussion Board

One of the potentially promising new therapies for chronic pelvic pain and IC is the use of a sympathetic amine, such as dextroamphetamine sulfate. Published research studies and/or case reports have shown a dramatic improvement in pelvic pain using this medication. They hypothesize that some pelvic pain originals in the sympathetic nervous system, which is targeted by this medication. This treatment approach is very confidential due to the highly addictive properties of amphetamines, yet patients are reporting some success. Read the discussions.

 

We're Looking For Medical Care Provider Recommendations

ICN Locate an Medical Care ProviderEarlier this year 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, dietitians 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 - Medication Side Effects

Jill Osborne, ICN President & Founder

(by Jill Osborne, ICN President & Founder)

We’ve all been there.. a doctor who listens to us describing our symptoms and then announces “that’s impossible,” implying that “it was all in our head.” It happened to me a few weeks ago. I had developed an unusual tremor in, of all places, my tongue. I was pretty scared. It made talking very difficult and, at times, it felt as if I was choking. A quick trip to my local Urgent Care clinic and a Neurologist gave me few, if any, answers. I wanted to know what was happening, why and what I could do about it. They both said that it was probably part of my inherited familial tremor.

On my Dad’s side of the family, we carry the same tremor that Katherine Hepburn struggled with, known as a benign “essential” tremor. It worsens with age yet usually doesn’t impact our daily life. My grandfather, for example, was still flying his plane in his 90’s despite the fact that his hand shook wildly on the controls. Yes, really!! I’ve certainly noticed moments of shaking since childhood that, in my forties, are now more common especially in my neck, chest and legs. Because the tongue tremor was so unusual, uncomfortable and interfered with my ability to work and talk, I freaked!

Two days later I had a hunch. I wondered if a new medication I’d been taking for my stomach, Reglan, had any unusual side effects. I quickly googled it and was floored to see that it was well known for causing, you guessed it, neck and tongue tremors. Difficulty talking or swallowing was considered an urgent side effect requiring immediate consultation with your doctor. A quick call to my gastroenterologist confirmed that both neck and tongue tremors were VERY COMMON with this medication and that I needed to stop it immediately. He also reported that there were rare cases when the side effects could become permanent. Yikes!

How could two other doctors, including a neurologist who specializes in tremor disorders, miss this connection?? I still don’t know but what I do know is that if I had sat passively at home without asking questions, I could have had a very serious complication. In hindsight, I should have done more than glance through the medication information sheet that came with my first prescription. I didn’t pay enough attention to the potential side effects. My mistake.

Side effects are a potential risk with any medication including those used for IC/PBS. Amitryptiline (aka Elavil) is well known for trigger dry mouth, weight gain, but if you look at the rarer side effects, tachycardia and/or arrythmias can also occur. I experienced all of those symptoms and could not tolerate this type of medication. Hydroxyzine (aka Atarax or Vistaril) can trigger some drowsiness when first taken but one of the more unusual side effects is that it can also trigger vivid dreams and, for some patients, nightmares. It’s rare, but it can happen. Pentosan polysulfate (aka Elmiron) can cause headache, stomach upset, hair loss and diarrhea. But, in rare cases (less than 1%), it has also caused anemia, conjunctivitis, tinnitus and retinal hemorrhage.

My purpose in talking about side effects is not to discourage you from trying any medication but to understand that even aspirin or advil can trigger unexpected reactions. You should be aware of the types of side effects that occur so that you can catch any problems early. My mouth problems are slowly improving but it was a definite wake up call for me to be even more conscientious about my medication use.

There are several web sites that provide searchable databases of medications, including:
Medline Plus – http://www.nlm.nih.gov/medlineplus/druginformation.html
Drugs.com - http://www.drugs.com
RX List – http://www.rxlist.com
Wikipedia – http://www.wikipedia.com

If you’re not familiar with the Physician’s Desk Reference (PDR), you should be. It is available in most libraries and on the web. This is an industry guide that you can use to research your medications, including the dosages, uses and potential side effects. It also includes pictures of pills so that you can confirm that you are taking the correct medication.

Your pharmacist can also be a great resource for information. My pharmacy provides pharmacy consultation services with almost all new prescriptions. And, ultimately, take the time during your appointments to ask your doctor what the potential risks of medications are. Is there a medication with fewer side effects? Is there a medication which is more affordable? It’s a little naïve to accept a prescription for a new medication without having some information about what that medication is supposed to do for you.

Well-known and somewhat controversial author Bernie Siegel MD once wrote that he didn’t want his cancer patients to be “patient.” He didn’t want them to passively sit in a hospital bed, quietly waiting for people to help. He wanted his patients to be “respants,” which stands for “responsible participants in their medical care.” He wanted them to be noisy. He wanted them to ask questions. He gave them permission to be angry, if needed. He wanted them to active and to be bold. In other words, he wanted his patients to fight back physically, mentally and emotionally. Some situations require patience, but many more require action.

Thus, when you find yourself struggling with a new symptom, a new reaction or something which genuinely doesn’t feel right or frightens you, I think it pays to be active. Don’t be patient. Pick up the phone and ask someone. Call your doctor. Speak with the nurse. Talk with your pharmacist. And, as in my case, if you don’t get assistance, keep asking until you do.

Yours, yet again, and always willing to talk about the more embarrassing side of life with IC – Jill O.

IC Diet Quick Summer Recipe - Berry Cobbler

Ingredients:

* 2 cups fresh Blueberries or Blackberries (actually any fruit will do - if it is frozen, make sure that it is well thawed before using)
* 1 cup all-purpose flour
* 2 tsp double-acting baking powder
* 1 cup sugar
* 2 eggs
* 3/4 cup milk
* 1 tsp vanilla extract
* 1 tsp grated lemon rind
* Whipped cream or vanilla ice cream (optional)

Wash and dry the berries if using fresh, or thaw, drain and dry the frozen berries. Place in the bottom of a 2 quart (2 l) ovenproof casserole or souffle dish. Sift the flour and baking powder into a large mixing bowl. Add the sugar, eggs, milk, vanilla, and lemon rind. Mix with a wooden spoon until thoroughly combined. Pour the batter over the berries and bake in the center of a 350F (180C) oven for one hour, until the top is browned. Remove from oven and let cool at least 15 minutes before serving. Top individual portions with whipped cream or vanilla ice cream if desired. Serves 4 to 6

 

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

 

IC Resources From 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 web site, 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!

Summer Essentials

Peppermint TeaICED TEAS - Are you missing your iced sweet tea or green tea? Yes, unfortunately, they do irritate a tender IC bladder but you do have plenty of other alternatives. Iced mint tea, preferably made as sun tea, is light, refreshing and reminiscent of a mint julep. Or, you could try some of the roasted carob teas, including English Toffee, Vanilla Hazelnut or Almond Sunset for a richer, more satisfying taste!

Click here to see all of our IC friendly teas!

 

Blueberry JuiceFRUIT JUICE - Yes, we know how frustrating it is not to have that refreshing bottle of fruit juice. Fortunately, there are some low acid alternatives that are worth trying. Kern's Pear Juice is available in most supermarkets and is light and refreshing. You might also try their Mango Juice. Just remember that all bladders are different. If you're in a flare, it's probably not a good idea to have any strong juices. We suggest that you try just a small amount first or, at the very least, try diluting it.

We offer Knudsen's Organic Pear Juice Boxes and Blueberry Juice Concentrate. Speaking of blueberry, combine blueberry juice and/or a handful of fresh blueberries with vanilla ice cream and blend with ice to make an IC friendly smoothie!

Click here to see our IC friendly fruit juices

 

LarabarsFRUIT & ENERGY BARS - You're out on your own, stomach rumbling, desperate for a snack. What can tide you over until you can find a meal? Why an energy bar of course. We sell several, including Larabars, Wha Guru's and, of course, Pear Pear and Pear Blueberry bars.

Click here to see our Fruit & Energy Bars

Our Top Ten Selling Products