Interstitial Cystitis Network Newsletter

This Week on the ICN! July18, 2014

Sponsored by: CystaQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - Squatty Potty - PainShieldMD

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Living with IC Videos


Blogs, News & Announcements

Ten Money Saving Tips for IC/BPS Treatments & Drugs

The first two phone calls I received Monday morning were from elderly gentleman who had been taking, with great success, Elmiron for their IC. The problem for each was that they had reached the "Medicare Donut Hole" and had just been told that they would have to pay more than $900 per month for their medication. Outraged by the cost, they each said that they couldn't afford it and were looking for options. This is the tragic reality that many patients face if insurance doesn't cover the only approved oral medication for IC. We hope that Jannsen Pharmaceuticals, Inc. (makers of ElmironĀ®) will hear our plea for a more affordable medication but the sad reality is that pharmaceuticals are a for profit business and they get to pick their price point. So, what's a patient to do? Here are some ideas that might help.

Click here to read the rest of the article!


Have you been punished By Your Employer For Using the Restroom?

It's hard to believe that, in 2014, companies are still trying to punish people who need to use the rest room more frequently. Case in point, Chicago's WaterSaver Faucet Company. Their union, Teamsters local 743, has filed a complaint with the National Labor Relations Board claiming WaterSaver unfairly disciplined 19 workers in June for "excessive use" of washrooms.

The company's definition of excessive use is "60 minutes or more over the last 10 working days."(1) Roughly six minutes a day, a standard that anyone with a bowel, kidney or bladder disorder would fail, much many normal functioning adults who drink a normal amount of water each day.

Read the full article here!


Eosinophilic Cystitis Resource Center

One of the bladder conditions often confused with interstitial cystitis is eosinophilic cystitis, aka EC. The symptoms are identical to IC but there is one critical difference. The bladder wall of an EC has an abnormal build up on eosinophils, a type of white blood cell.

The ICN has offered support to EC patients since 1999 when we met our first EC patient, "Cricket." Since then, we've worked with hundreds of patients who struggle with this rare disease including many children. For some patients, there is a clear and distinct trigger, such as an allergy. Removing that trigger may cure the condition. For others, EC requires complex treatment. Visit the ICN EC Resource Center here!


RIMSO-50 Shortage?

Has anyone experienced a shortage in obtaining RIMSO-50 (aka DMSO)? We've had a few phone calls from patients who were told that it was in a production shortage but we haven't found any supporting information. Anyone else? Please e-mail us at:



The ICN Mail Order Center -

800.928.7496 or 707.433.0413

MultiRight Low Acid Multivitamin

MultiRight Low Acid MultiVitamin We are pleased to announce that MultiRight, the low-acid pH balanced multivitamin is now back in stock. It was unavailable this Spring while the formula was adjusted to make it yet more bladder friendly. Now it's pH balanced, which means that it's pH neutral. What does that mean?? it's even LESS ACIDIC and MORE BLADDER FRIENDLY than most other vitamins on the market. If you've had flares from Centrum's and One A Day's, then you know exactly what we're talking about.

MultiRight has been tried by hundreds with sensitive bladders and most tolerated it well. The few that didn't appear to have more inflamed bladders, often with untreated Hunner's Ulcers. Unfortunately, we can't tell you if your bladder will tolerate it well. If, for example, you're in an IC flare or bladder is extremely sensitive to foods, you might want to try a half pill first and/or wait until your flare calms down.

As a dietary supplement, take one tablet daily, preferably with a meal or as directed by your physician. It is NOT formulated for use in children.

Buy Now

AZO Test Kits Back In Stock

qWhen interstitial cystitis flares feel exactly like a bladder infection, sometimes it's hard to tell the difference. In fact, many IC patients mistakenly assume their IC flares are infection... often for years. The great news is that we now have a tool that can help you determine if your sudden onset of symptoms is a typical flare or a real bladder infection - the AZO Urinary Test Kit.

This simple, easy dip stick tests for the presence of leukocytes and nitrates in urine. Leukocytes are white blood cells and are often found in the urine of IC patients struggling with flares or infection. Nitrates, however, are a specific by-product of bacterial infection.

  • A double positive nitrate and leukocyte result means that you have infection and should call the doctor to have your urine tested.
  • A positive nitrate and negative leukocyte means that your body may have the start of an infection. Again, call your doctor and ask for a urine culture.
  • A negative nitrate and positive leukocyte is common for patients having IC flares. It means that no infection has been detected but that your bladder is inflamed and irritated. This suggests that you're having a flare instead of infection.

Please note that these dipstick tests are not 100% accurate. If you experience an IC flare that just won't go away or if you ever see visible blood in your urine, experience severe pain or develop a fever in conjunction with your bladder symptoms, you should call your doctor immediately. These are signs of a potentially severe bladder infection.

Learn More or Buy Now

AZO Urinary Pain Relief Tablets

qA first line of defense against bladder pain and discomfort is the use of AZO Urinary Pain Relief tablets, the OTC version of Pyridium. Effective for minor to moderate bladder wall pain, it may also provide fast relief for burning, urgency and frequency associated with infection, trauma, bladder procedures and catheters.

Each tablet contains 95 mg Phenazopyridine Hydrochloride, the #1 ingredient prescribed by doctors and recommended by pharmacists for urinary discomfort.

AZO Urinary Pain Relief is not meant for long term use. It is generally used for short periods of time (i.e. during treatment of infection, after procedures, flares, etc.) on an as needed basis. Please talk with your doctor if your symptoms are prolonged and chronic. Other pain interventions may be appropriate, such as a topic oil (ProSirona, TigerBalm) or traditional pain medication.

Learn more or Buy Now!

Find these products & more in the ICN Mail Order Center!