Fall 2007 IC Optimist Now Available!
We're delighted to announce that our Fall 2007 IC Optimist is now available, albeit a few weeks late due to ICN Founder Jill Osborne's unexpected hospital stay last month. (She'd like to say THANK YOU to everyone who sent her cards and emails and says that she is recovering.) ICN Silver and Gold subscribers should have received their email copies last week. Angel and Professional subscribers copies were mailed out earlier this week.
Our feature story covers the challenges that older patients (i.e. those over 50+) face when struggling with interstitial cystitis. From obtaining a correct diagnosis to selecting appropriate treatments, seniors with IC face very unique obstacles.
Are vitamins safe to take with IC? Registered dietitian Julie Beyer, author of Confident Choices: Customizing the IC Diet, appeared in the ICN "Meet the IC Expert" Guest Lecture series discussing vitamin use. She also provides several menu suggestions and answers many questions on the IC diet.
Gaye Sandler, author of Patient to Patient: Managing IC & Related Conditions interviewed hormone specialist Dr. Randy Birken (Baylor Univ.) about the use of bioidentical (plant based) hormones to fight menopause related symptoms. If you're approaching menopause or struggling with hormone replacement, this is the article for you. And, if you're like many IC patients who take medications that "dry you out," you'll find the "Self Help Tip of the Month: Managing Dry Mouth and Dry Eyes " very helpful.
Of course, we offer a summary of the most interesting research studies released this fall, including a possible new breakthrough in how the bladder wall becomes injured (the Tamm-Horsfall Protein), the concept of overactive bladder and IC as a hypersensitization disorder, a high rate of pelvic surgeries and hysterectomies in IC and more!
For IC patients who love to cook, Bev Laumann, author of A Taste of the Good Life: A Cookbook for an IC Diet shares her favorite IC friendly Fall Dinner Recipes. From glazed porkchops to wine, butternut squash to pumpkin cheesecake, you'll find several tasty recipes and meal ideas here! Of course, there's even more in this magazine!
Now Available For Purchase - Print or E-mail (PDF file)
NIDDK Convenes Important IC/Pelvic Pain Workshop
This week one of the most important IC research conferences in recent history will convene in Baltimore, Maryland. The Multidisciplinary Approach to Defining the Urologic Chronic Pelvic Pain Syndromes: A Workshop seeks to answer a vital question "Is IC and prostatitis related to chronic fatigue syndrome, fibromyalgia, IBS and other pelvic pain conditions?" What makes this conference unique are the contributors and atttendees, a wide variety of researchers and clinicians who specialize in many different conditions. Working together, they hope to create a new daignostic algorithm that can be used by all physicians who treat pelvic pain disorders, not just urologists. They will then offer some preliminary testing over the Winter and Spring of 2008.
Yes, Virginia, this means that we're really looking at IC as more than just a bladder disease for some patients. Far too many of us have the typical related conditions, particularly IBS. Perhaps the most powerful result of this conference is the credibility that it will give to each and every patient who has, for years, been told that the conditions aren't related and/or that it was "all in our heads." Clearly, it isn't. We hope that this conference will identify, once and for all, just how these conditions are related. This is a dramatic and encouraging change in direction for the IC research movement and, particularly, the NIDDK. We say "Bravo" and "Thank You! "
ICN Launches New Website
It's taken a year of development in testing new designs, new colors and creating new content and we're proud to announce that we've launched our new, much improved website. From the back end, the coding is completely customized and up to date. On the front end, the new navigation and links should help you find your way around the site much easier. We've also created several new sections on treatments, self help, support and diet. We've also updated our men's section and created an easy diet cheat sheet and reference guide that you can print out and put on your refrigreator. As always, we welcome your feedback, ideas and suggestions. What can we do better??? What new resources do you need??? Any missing links??? Please send us your feedback!
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CellCept Clinical Trial Temporarily Halted
Last month, the FDA notified healthcare providers that the use of CellCept (mycophenolate mofetil) is associated with increased risk of first trimester pregnancy loss and increased risk of severe birth defects. For the IC community, this was a shocking blow because the latest NIDDK clinical trial for severe IC is testing Cellcept as a potential treatment. Thus, patients began receiving vague notifications from their research centers that the study was being halted and/or that women of childbearing age were being excluded.
We contacted the NIDDK for clarification of the study. Dr. Lee Nyberg responded " Enrollment and treatment in the trial has been temporarily suspended until the protocol has been revised to incorporate the latest FDA information. This revised protocol will need to go through the approval processes of both the Data Safety Monitoring Board for the trial as well as the Individual Review Boards of each participating institution. As of now, we do plan to reopen the trial once the revsions have been approved."
This does not mean that Cellcept is a bad treatment. We'll have to wait for the results of the study to discuss its effectiveness. But, while it is being studied, it is clear that birth control MUST be used conscientiously. Click here to read the FDA Safety Warning.
The Latest IC Research
Sympathetic Amine Therapy Appears To Improves Pelvic and GI pain
Here's a completely new way of considering IC. Could some of us have "a defect in the sympathetic nervous system which leads to increased capillary permeability." In 2005, researchers presented a case study which showed that sympathetic amine therapy had dramatically relieved IC pain in a patient. In Fall 2007, three more case reports (not clinical trials) were released which found that the use of dextroamphetamine sulfate improved pelvic pain and esophageal pain. How? Researchers suggest that the medication restores proper blood vessel permeability thus stopping the absorption of irritants. It's a fascinating theory worth reading more about, particularly if you are not responding to other treatments. You can print out the article abstracts below to share with your physician if you are interested in pursuing this further.
- A disorder of sympathomimetic amines leading to increased vascular permeability may be the etiologic factor in various treatment refractory health problems in women.
- Sympathomimetic amine therapy may improve refractory gastroparesis similar to its effect on chronic pelvic pain--case report.
- Dramatic relief of chronic pelvic pain with treatment with sympathomimetic amines--case report.
- A novel highly effective treatment of interstitial cystitis causing chronic pelvic pain of bladder origin: case reports.
Japanese Study Finds Higher Age Range Than Other Countries
Researchers in Japan conducted a rather large survey of more than 280 patients to determine common patient characteristics and treatment trends in their country. Unlike other national studies, they found that the majority of patients (31%) were in their 60's. Patients waited an average of 36.5 months (3 years) to receive a diagnosis of IC. The most frequent symptom was urinary frequency (98.3%). Urinary urgency was noted in 62% and supra-pubic pain was noted in 41.6%. Most patients were found to have glomerulations in their bladders. Only 19 patients had Hunner's Ulcers. The most widely carried out therapy was hydrodistension (67.9%), followed by oral suplatast tosilate (65.6%), antihistamine (25.6%) and intravesical dimethylsulfoxide (23%).
Oral & Intravesical Pentosan Polysulfate (Elmiron) Found To Be Safe and Effective
IC patients in Southern California will recognize the name Dr. Edward Davis, one of the key researchers of this study who has long sponsored the Citrus Valley IC support group. This team conducted a double blind placebo controlled study that compared the effectiveness of using pentosan polysulfate orally and as a bladder instillation as compared to just the oral medication. A total of 41 patients participated in this study. Half received the medication orally and as a bladder instillation, the other half received oral pentosan and only a placebo bladder instillation. Patients who received both oral and intravesical pentosan therapies had a substantial improvement in their quality of life at week 18, when compared to the controls. The researchers concluded "The use of intravesical pentosan polysulfate sodium simultaneously with oral pentosan polysulfate sodium is a safe and effective therapeutic option. These findings will open a new option for patients with interstitial cystitis to reduce their severely devastating symptoms and to improve their quality of life and well-being.
- Safety and Efficacy of the Use of Intravesical and Oral Pentosan Polysulfate Sodium for Interstitial Cystitis: A Randomized Double-Blind Clinical Trial.
Self-Help Tip of the Month: Managing Dry Mouth & Dry Eyes
(by Jill Osborne, ICN President & Founder)
One of the most frustrating side effects of the various medications that IC patients use is dry mouth. You know the feeling. Dry cracked lips, an almost painful dryness in your mouth and on the inside of your lips, difficulty speaking or swallowing and even a tender tongue. You may notice that you’ve also had more mouth sores. You are not alone!
I remember being in a deposition a few years ago when I was taking Elavil, a medication well known to cause dry mouth. Because speaking was so difficult, I sipped water throughout the interview to keep my throat and mouth moist. Eventually, the attorney who was interviewing me became irritated and said “I know why you have IC. It’s because you drink too much water.” (Just a tad arrogant, wouldn't you say?) I picked up the glass, which was only half full, and said “No, Your wrong. I’ve drunk only a small portion of water in the past few hours. I’m sipping water because I have a very dry mouth due to my IC medication.” Dry mouth is a real and often frustrating condition.
Ironically, dry mouth teaches us the importance of having enough saliva in our mouth. Saliva does far more than keeping our mouth wet. It also helps to digest food. It helps us to swallow effectively. It protects teeth from tooth decay and helps control bacteria and fungi in our mouths. Without saliva, we’re often far more prone to cavities as many IC patients, myself included, can report.
If you’re struggling with dry mouth, your first stop should be your physician. They may wish to adjust your medication and/or change the dosage to help relieve your symptoms. It is helpful to sip water throughout the day and avoid beverages with caffeine which, if you’re already following the IC diet, you’ve already stopped. Caffeine can dry out the mouth. Chewing gum can help stimulate saliva flow. Even using a humidifier at night can make a difference.
The great news is that Biotene, a company based in the USA, has created several dry mouth products that can help. They offer a dry mouth chewing gum and toothpaste. But, the product that you might find the most helpful is their dry mouth liquid moisturizer, which I’ve used on the inside of my lips. It has a very light, pleasing taste and helps to reduce that uncomfortable dry, burning sensation.
Dry eyes are another obstacle that we face, also the result of various medications. Dry eyes often feel scratchy or have a stinging sensation. They often feel strained after reading or a long drive. Because chronically dry eyes can lead to tiny abrasions on the surface of your eye, it’s vitally important that you discuss your eyes with your doctor and, better yet, an opthamalogist. They may recommend lacrimal plugs which can help your eye retain moisture. They may also suggest a variety of eye drops. It’s always nice to try some samples before investing a lot of money in eye drops because you might be sensitive to some ingredients.
I’ve found that the cheaper store brand eye drops often contain polyvinyl alcohol or benzalkonium chloride which always make my eyes sting badly. Of course, brands like Visine that help reduce red eyes don’t work for dry eyes and can also be badly irritating. Look for eye drops that are labeled as artificial tears instead. I’ve found that Tears Naturale II, Tears Natural Free and Bion Tears are, by far, the most soothing and comforting.
Luckily, both dry mouth and dry eye symptoms often resolve once you’ve stopped using the medications in question. Carry hope in your heart and repeat after me “This too shall pass.” If you have any dry eye or dry mouth suggestions or ideas for other self-help columns, please send them to me (jill@ic-network.com)! I’d love to hear your questions, burning issues and, of course, your success stories.
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!
We've recently updated our support group listings and are happy to announce new groups in the Ozarks (Arkansas & Missouri) and Connecticut. Please note that the Philadelphia, PA support group has cancelled all operations due to a lack of participation.
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 Shop - http://www.icnsales.com - (707)433-0413
ICN Holiday Sale - Finding Comfort and Joy
From now through Sunday evening, we're offering a special ICN sale for the items that patients love the most for their comfort and calming effects. From cuddling with Sleepy Pete Lamb Heating pad to enjoying a wonderful cup of IC friendly Gingerbread Spice or Christmas Eve herbal tea, we're sure that you'll find a special something to give as a gift or to pamper yourself with. Customers will receive 10% off and ICN Angel Subscribers will receive 25% off selected items. Your discount and sales price will be applied during the checkout process AFTER you enter the coupon code below!
COUPON CODE - XMAS2007
Gingerbread Spice Tea by Celestial Seasonings |
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IC Friendly Treats & Stocking Stuffers |
Holiday Office Hours
Our offices will be closed from Christmas Eve through New Years Day, however we will be processing orders placed on the computer and/or by phone message. If you have questions about any orders during the holidays, please e-mail: shipping@ic-network.com.
