Elmiron: IC Drug Shortage Announcement 05/27/2011
I recently received information from Ortho Women's Health & Urology (a Division of Ortho-McNeil-Janssen Pharmaceuticals), the manufacturers of Elmiron, that a shortage of Elmiron is being anticipated. (Please do not contact me directly regarding the Elmiron shortage-visit the websites listed below or contact OWHU directly via the 800# listed in the last paragraph.) Here is the drug shortage announcement as it was conveyed to me: On behalf of Ortho Women’s Health & Urology (OWHU), Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., we wanted to inform IC patients about a product shortage of ELMIRON® (pentosan polysulfate sodium) 100 mg capsules. ELMIRON® is an oral prescription medication indicated for relief of bladder pain or discomfort associated with interstitial cystitis, a chronic condition of the bladder that affects both women and men. We anticipate this shortage, due to manufacturing delays, could last several months, thus limiting the supply of product available to patients. We are doing everything possible to resolve this shortage and re-establish supply to patients as quickly as possible. We have contacted the U.S. Food and Drug Administration (FDA), pharmacists, physicians, and patient groups to share this news with them directly. Physicians or patients that have questions about this product shortage can contact the OWHU Customer Communications Center at 1-800-526-7736. Physicians seeking information also can visit www.myorthoelmiron360.com; patients can visit www.orthoelmiron.com. 6 Comments ICPBS: Stem Cell Treatment 03/06/2011
"My real resume was in my cells." Vincent Freeman in Gattaca How many times do you hear or read: The future is here? Well, for the first time, I really believe that the future of treating IC/PBS in a completely new and exciting way has arrived and it is both encouraging and inspiring. Once again the introduction to the doctor that I will introduce in this blog entry and his treatments for IC/PBS, was done out of kindness and advocacy for IC patients, and I would like to publicly thank this professional in the world of IC for introducing me to Dr. Elliot Landers. I had the honor of being introduced to Dr. Elliot Landers-once again through the virtual world-and then via telephone and although our first phone conversation was brief, I felt so very hopeful for the millions of people suffering from IC/PBS. Imagine a treatment for IC/PBS (or other degenerative diseases) that utilizes your body's own stem cells, conducted in a center specializing in stem cell therapy, completely supported by a team of dedicated doctors that are blazing a trail in this area? After my conversations with Dr. Landers I realized that no longer will one have to imagine this scenario: one can become a part of it! The excitement Dr. Landers has about stem cell therapy and the limitless possibilities for how stem cells can help people suffering from IC/PBS (and other degenerative diseases) is contagious and when he said "I believe stem cells are the wave of the future in medical science" I believed him and realized that the technologies he was speaking about are happening right now. Today. Dr. Landers has an extensive background in biochemistry and has worked in the field of urology and general surgery. Most recently he has worked in the field of Male Hormone Replacement therapy as well as ground-breaking work in urologic stem cell therapy. Dr. Landers, along with Dr. Berman and Dr. Braslow, have been working with adult mesenchymal (non-embryonic) stem cells to study the benefits of: harvesting the patients own adipose (fat)-derived stem cells through out-patient surgery, and then reimplanting the adipose cells back into the patient in order for those cells to seek out and regenerate the cells in parts of the body that have become damaged (like the bladder in IC/PBS patients). Drs. Landers, Berman and Braslow have recently formed the California Stem Cell Treatment Center out of Rancho Mirage, CA where they will begin to provide stem cell therapy treatments to patients suffering from a multitude of degenerative diseases (including IC/PBS). Here is their website, I would highly encourage setting aside some time to read through this website as it very well put together and has a lot of information about stem cell therapy and includes a hyper-link to a PDF file explaining the potential benefits of stem cell therapies for IC/PBS patients:http://www.stemcellrevolution.com/ It is important to point out that stem cell therapy is not FDA approved here in the United States and so the work that is being done at the California Stem Cell Treatment Center is being conducted as patient-funded pilot studies to provide further data points for adipose-derived stem cell research, which began in China. The doctors at the California Stem Cell Treatment Center are initially offering adipose stem cell therapy at half-price in the amount of: $4500.00 U.S. It is this demonstration of generosity and the courage to carve a path in unchartered territory here in the U.S. that the work that Dr. Landers and his colleagues are undergoing brings me great hope for the millions suffering from IC/PBS. Dr. Landers has been working closely with Jill Osborne, President and Founder of the IC Network and in one of their conversations he explained the benefits of utilizing stem cell treatment for IC/PBS in a nutshell: "Stem cells treat degeneration and inflammation on a systemic level, naturally focusing on the body parts most afflicted but not ignoring the overall extent of disease." This makes sense on so many levels because I have talked with countless IC patients who feel that IC pain and symptoms seem to be about more than simply their bladder. Perhaps that explains why current and past IC treatments which focused solely on treating the bladder have not been completely successful, for instance there are a countless number of IC patients that were in excruciating pain who opted to have their bladders removed, only to discover to their horror that the pain of IC remained. The future for treating IC/PBS patients with stem cell therapy is here and it is happening now. I am thankful to have had the opportunity to speak with Dr. Landers and to hear about the work of adipose stem cells and the opening of the California Stem Cell Treatment Center in California. I wish Dr. Landers and his colleagues much success in this arena and I look forward to hearing how stem cell therapy assists those suffering from IC/PBS. Be a part of IC advocacy 03/25/2010
I thought it was important to add one more blog entry this week in honor of the annual ICA walk on Capitol Hill. Now is a great time to contact legislatures and your state representatives and congressman and tell them that IC/PBS is a prevalent disease in this country and that our voices need to continue to be heard. Getting attention on Capitol Hill is a great way to demonstrate the need for awareness and funding for testing and treatment protocols. So stand up and be part of the wave of bringing IC/PBS to the forefront of decision makers. Go to the ICA home page (www.icahelp.org) under News & Events to download a sample letter to send to legislatures. More than just a number 03/09/2010
The ICA recently posted a graph showing an estimated break down of the prevalence of IC by state (linked at the bottom of this post), and the numbers of people with IC took my breath away. Over the years the estimates of people living with IC in the U.S. has always fluctutated from 600,000 to a million, and numbers in between. I am happy that those numbers have finally reached a more accurate count (although I am of course saddened that it proves how many people suffer from this painful and debilitating disease). It is safe to say that those of us suffering from IC are no longer just another number. I know that within the next decade, IC/PBS will reach the same status and recognition that Fibromylagia, Lupus, and MS finally reached (after 20+ years of misdiagnosis, etc.) IC will continue to be in the limelight and I'm proud at how far doctors and researchers have come at finding new ways to diagnosis and treat IC. http://www.ichelp.org/Page.aspx?pid=740 IC in recent news 05/11/2009
Interstitial Cystitis was the featured disease on the show "The Doctors" on April 16th and the response from the IC community was greater than anticipated. The response was so impressive that the show is seeking IC sufferers living in the LA area to fill out the form on their website to possibly be featured on their next show about IC. Here is their website if you are interested: www.thedoctorstv.com |
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