This is a special mailing from the ICN regarding the current medication shortage. You are receiving this email because you entered your e-mail address on our site. You may "opt out" at any time by clicking the unsubscribe link at the bottom of this email. The ICN does not send out unsolicited email or SPAM
ICN SPECIAL ANNOUNCEMENT
Elmiron Shortage May Last "Several Months."
IC patients using Elmiron may have had a shock when they attempted to refill their prescriptions in the last month. As we announced on our website two weeks ago, Elmiron is currently unavailable from many pharmacies due to a manufacturer's "temporary supply shortage". Ortho-McNeil-Janssen Pharmaceuticals, Inc. recently advised the FDA that this shortage could last several months.
Why? ICN member PhoenixGirl learned from the company that there may have been a quality control problem. She wrote " I just called again and was told that the information on the website is correct. There IS a shortage and it will be several months before Elmiron will be shipped out again. Apparently there was just a meeting this morning where they were told that there was incomplete product prepared during manufacturing that did not meet the acceptable guidelines so all shipments are suspended for the time being. The representative told me that any medication that is out there is safe to take but that it could be very hard to find and that we should make arrangements with our doctors to plan accordingly." Another ICN member GardenGirl2 confirmed the same account when she also called the company though she was told the product was "unfinished" rather than "incomplete."
Pharmacy personnel have incorrectly told patients that Elmiron is no longer available. Elmiron production has not been stopped. This is a temporary shortage but it may be extremely difficult to find the medication and/or it may cost you more.
A few days after her first post, Phoenix Girl wrote "I called the Tel-Drug department of my insurance carrier on Thursday to see if they had some in stock and they assured me they had enough to send out my three-month supply. I called today to see if it had shipped yet because I'm out of my current supply on Wednesday. They told me there was none to ship; that apparently there were other orders that went out while mine was being "processed". In the meantime, I passed up an opportunity to get some from my local Walgreen's because I would've had to pay cash, $503, for a one-month supply because it had been less than 30 days since my last prescription. I called today, figuring I'd try to just bite the bullet and get it anyway and they told me they are out of stock now.
ICN member honeymuffin wrote "I was only able to pick up 10 pills from a local Walgreens. They called 6 other stores around and none had any in stock. For the 10 pills I still had to pay my regular $35 copay that I normally pay for 120 pills. I was able to find and order some from an online Canadian pharmacy for $485 for 200 pills plus shipping. I don't know if the stuff they have is real Elmiron or this Australian equivalent I've been reading about here. Their pharmacist left me a message saying it is in stock and should ship tomorrow after they verify my presciption, but I'm still nervous that something may go wrong."
What to do in the short term? Some patients have asked their doctors if they can reduce their daily dosage to extend what supply they have until the medication becomes available again. Not a bad idea provided, of course, that your physician agrees with this strategy. Others are turning to OTC supplements, such as Cystoprotek or CystaQ, to bridge the gap. A company based in India, Swati Spentose Pvt Ltd, has produced the first generic pentosan polysulfate (Comfora) that may soon be available to patients in the USA. We will share more information about this as it becomes available.
Has the shortage effected you??
Looking for strategies on how to extend your prescription?
Have you tried to find the medication at other pharmacies?
Click here to post your questions and/or share your experiences
ICN Survey Center Needs Your Input
The ICN has a long history of collaborating with researchers and we're proud that data generated from our site has been presented at major medical conferences including the NIDDK Basic Bladder Science Symposium, ACOG, ISSWSH, AUA and others. Without the gift of your time, this would not be possible. Thank you! We currently have four active surveys in the ICN Survey Center that need your input.
(1) Weight Loss Programs and IC - Are any bladder friendly?
(Summer 2011) We're curious! With so many prepackaged foods prepared for weight loss programs, is there a program (or programs) which are more bladder friendly than others? We're asking for your personal experience with various national weight loss programs, including:
- Atkins
- Jenny Craig
- Medi-Fast
- Monavie
- Nutrisystem
- SlimFast
- South Beach
- The Zone
- Weight Watchers
Please share your experience! Click here to take the survey!
(2) Ketamine Use and IC - Is there a connection?
This survey is for all patients struggling with IC and/or other bladder symptoms.
(06/11) Ketamine (aka Special K, Vit K, etc) is a recreational drug that is commonly used at parties and raves. Available throughout the world, recent research has demonstrated that ketamine can cause severe bladder ulceration that results in symptoms and bladder ulcers similar to IC. In the past few years, the ICN has worked with several ketamine users who were diagnosed with IC, primarily teens in Asia, Europe and the USA.
We're interested in seeing just how many IC patients may have used ketamine in their past. Absolutely no personal information will be collected in this survey, nor will an email address be collected.
(3) The Incidence of Urological Symptoms in Ketamine Users
This survey is for anyone who has used or is using ketamine who may, or may not, be experiencing bladder symptoms and is collecting data primarily through our Ketamine Bladder Syndrome website.
(05/11) Have you used, or are you using, ketamine?? Peeing blood? Can't sleep through the night without running to the restroom? Ketamine has a powerful, damaging effect on the bladder and kidneys. The purpose of this survey is to gather some baseline data about ketamine use and the incidence and/or awareness of bladder symptoms that may develop with ketamine use. Please help us learn more about this! No personal identifying information is required or will be collected other than your country and/or region of origin.
(4) Medical Marijuana and IC
Medical marijuana is a difficult, politically sensitive subject. While research studies have shown that medical marijuana can be effective in reducing neuropathic pain and/or muscle tension disorders, it is still illegal for use in many states. Our goal is to collect some data that can help determine if medical marijuana is helpful or hurtful in the management of pelvic pain and IC symptoms. Your answers are entirely anonymous. We will not ask for any identifying information from you. We simply want to know what your experience is. We hope that the preliminary data gathered in this survey may be used to support a larger funded study into the use of medical marijuana for IC or pelvic pain symptoms.
