The IC Underground

We’ve launched a brand new series of interstitial cystitis videos that you can now view on youtube. You’ll find a wide variety of self-help videos on managing IC flares, treating dry mouth effectively, sensitive skin, chocolate alternatives and much, much more!

http://www.ic-network.com/videos/

or

Just search You Tube for Interstitial Cystitis… or Jill Osborne. You can also subscribe to our video series.

Jill O.

A free meeting to discuss IC and its related conditions (chronic fatigue, endometriosis, fibromyalgia, IBS, vulvodynia and TMJ) is being held in the greater Milwaukee area on Tuesday, April 28, 2009. Sponsored by the IFFGD and The TMJ Association, three speakers will be participating including:

“Advancing the Pain Research Agenda at the National Institutes of Health ” -  John W. Kusiak, Ph.D., National Institutes of Health, Bethesda, MD

“How to Talk to Your Doctor – You are Not Alone ” - Lin Chang, M.D., UCLA David Geffen School of Medicine

“Complex Persistent Pain Conditions: Unique & Shared Pathways of Vulnerability” William Maixner, Ph.D., D.D.S., University of North Carolina School of Dentistry, Chapel Hill.

When: Tuesday, April 28, 2009 at 6:00 p.m. – 9:00 p.m.

Where: Crowne Plaza Milwaukee-Wauwatosa Hotel, 10499 Innovation Drive, Wauwatosa, Wisconsin 53226
(Located just south of W. Watertown Plank Road between Hwy 45 and N Mayfair Road)

Cost: No cost to attend. Reservations recommended.

Register: Call Toll Free: 1-888-964-2001 or E-mail: overlappingconditions@iffgd.org

Well, what can I say. I, for one, have had bladder symptoms since childhood. I had a severe bladder infection during the christmas holiday when I was in 7th grade that led to several years of frequency and urgency. I can still remember how hard it was to fall asleep because I always felt as if I needed to urinate. My bladder was sooooo tender. So, could have it contributed to the IC?? I think it was probably early IC and had I known about diet back then I would have done many things differently… err… like not have urethral dilations ever week for two years. Yow, those hurt. - Jill

Monday, 08 December 2008

Department of Urology, Ministrelli Program for Urology Research and Education, William Beaumont Hospital, Royal Oak, Michigan.

To explore the prevalence of recurrent urinary tract infection and elimination difficulties experienced in childhood and adolescence in adult women with interstitial cystitis/painful bladder syndrome (IC/PBS) and community controls. The relationship between dysfunctional voiding and bowel symptoms in early life and the development of IC/PBS is not clear.

A questionnaire was developed and mailed to 406 women with IC/PBS (patients) and 5000 community-dwelling controls. The demographic, personal, and family health history data and the urinary and bowel symptoms experienced in childhood, adolescence, and adulthood were collected. The data were analyzed using the Student t test and multiple logistic regression analysis.

A total of 215 patients (53%) and 823 controls (16%) returned the questionnaires (controls with a previous IC/PBS diagnosis or not meeting the inclusion criteria for either group were excluded from analysis). The 215 patients, 126 controls reporting IC/PBS symptoms but no diagnosis, and 464 asymptomatic controls were compared regarding symptoms and events experienced in childhood and adolescence. Statistically significant differences were seen among the groups for recurrent urinary tract infection (P < .0001) and frequent antibiotic use (P < .0001) in childhood and for all symptoms in childhood and adolescence, including trouble starting the urinary stream (P < .0001 for both), urgency (P < .0001 for both), retention (P = .0038 and P < .0001, respectively), constipation (P = .0006 and P = .0001, respectively), and painful defecation (P < .0001 for both). Multiple logistic regression analyses showed statistically significant differences between the patients and asymptomatic controls in childhood bladder infections (P = .006) and urinary urgency (P = .001) in adolescence.

These results support the need for longitudinal prospective assessment of children with dysfunctional elimination symptoms to determine whether these symptoms progress to IC/PBS. Additional research will contribute to our understanding of the natural history of IC/PBS, promote its earlier diagnosis, and potentially prevent disease progression.

Written by:
Peters KM, Killinger KA, Ibrahim IA. Are you the author?

Reference:
Urology. 2008 Nov 24. Epub ahead of print.
doi:10.1016/j.urology.2008.09.014

FDA Public Health Notification: Serious Complications Associated with Transvaginal Placement of Surgical Mesh in Repair of Pelvic Organ Prolapse and Stress Urinary Incontinence

Issued: October 20, 2008

Dear Healthcare Practitioner:

This is to alert you to complications associated with transvaginal placement of surgical mesh to treat Pelvic Organ Prolapse (POP) and Stress Urinary Incontinence (SUI). Although rare, these complications can have serious consequences. Following is information regarding the adverse events that have been reported to the FDA and recommendations to reduce the risks.

Nature of the Problem

Over the past three years, FDA has received over 1,000 reports from nine surgical mesh manufacturers of complications that were associated with surgical mesh devices used to repair POP and SUI. These mesh devices are usually placed transvaginally utilizing tools for minimally invasive placement.

The most frequent complications included erosion through vaginal epithelium, infection, pain, urinary problems, and recurrence of prolapse and/or incontinence. There were also reports of bowel, bladder, and blood vessel perforation during insertion. In some cases, vaginal scarring and mesh erosion led to a significant decrease in patient quality of life due to discomfort and pain, including dyspareunia.

Treatment of the various types of complications included additional surgical procedures (some of them to remove the mesh), IV therapy, blood transfusions, and drainage of hematomas or abscesses.

Specific characteristics of patients at increased risk for complications have not been determined. Contributing factors may include the overall health of the patient, the mesh material, the size and shape of the mesh, the surgical technique used, concomitant procedures undertaken (e.g. hysterectomy), and possibly estrogen status.

Recommendations

Physicians should:

Obtain specialized training for each mesh placement technique, and be aware of its risks.

Be vigilant for potential adverse events from the mesh, especially erosion and infection.

Watch for complications associated with the tools used in transvaginal placement, especially bowel, bladder and blood vessel perforations.

Inform patients that implantation of surgical mesh is permanent, and that some complications associated with the implanted mesh may require additional surgery that may or may not correct the complication.

Inform patients about the potential for serious complications and their effect on quality of life, including pain during sexual intercourse, scarring, and narrowing of the vaginal wall (in POP repair).

Provide patients with a written copy of the patient labeling from the surgical mesh manufacturer, if available.

Additional patient information can be found on the following FDA Consumer website at http://www.fda.gov/cdrh/consumer/sur…sh-popsui.html.

Reporting Adverse Events to FDA

FDA requires hospitals and other user facilities to report deaths and serious injuries associated with the use of medical devices. If you suspect that a reportable adverse event was related to the use of surgical mesh, you should follow the reporting procedure established by your facility.

We also encourage you to report adverse events related to surgical mesh that do not meet the requirements for mandatory reporting. You can report directly to MedWatch, the FDA Safety Information and Adverse Event Reporting program online at www.fda.gov/MedWatch/report.htm, by phone at 1-800-FDA-1088, or obtain the fillable form online at www.fda.gov/MedWatch/getforms.htm, print it out and fax to 1-800-FDA-0178 or mail to MedWatch, 5600 Fishers Lane, Rockville, MD 20852-9787.

Getting More Information

If you have questions about this notification, please contact the Office of Surveillance and Biometrics (HFZ-510), 1350 Piccard Drive, Rockville, Maryland, 20850, Fax at 240-276-3356, or by e-mail at phann@cdrh.fda.gov. You may also leave a voice mail message at 240-276-3357 and we will return your call as soon as possible.

FDA medical device Public Health Notifications are available on the Internet at http://www.fda.gov/cdrh/safety.html. You can also be notified through e-mail each time a new Public Health Notification is added to our web page. To subscribe to this service, visit: http://service.govdelivery.com/servi…?code=USFDA_39 .

Sincerely,

Daniel G. Schultz, MD
Director
Center for Devices and Radiological Health
Food and Drug Administration
__________________

WASHINGTON, D.C., October 20, 2008 – The National Association of Nurse Practitioners in Women’s Health (NPWH) today announced the launch of Interstitial Cystitis Awareness Week, October 20-24, 2008. This week of activities, planned in partnership with the Interstitial Cystitis Network (ICN) with the support of Ortho Women’s Health & Urology™, aims to raise awareness of this painful bladder condition and demonstrates the transformative power and support that new communications technologies can provide for small patient groups.

An estimated one million Americans suffer from interstitial cystitis (IC), a painful, and often debilitating, chronic condition in which the bladder lining becomes irritated and inflamed. The condition mostly affects women, who make up an estimated 90 percent of IC patients. “Imagine you have a deep paper cut that you pour an acidic liquid onto, continuously. That is only a fraction of what many IC patients feel in their bladder and pelvis on a regular basis. Some IC patients describe throbbing, stabbing pains and muscle spasms that take their breath away,” says Susan Wysocki, President and CEO, National Association of Nurse Practitioners in Women’s Health.

NPWH and ICN share a strong commitment to raising awareness of IC because it is neither a well-known nor well-accepted medical condition. The symptoms of IC – pain in the pelvic area, going to the bathroom urgently or frequently, and pain during or after sex – are easily mistaken for other pelvic conditions such as endometriosis, recurrent urinary tract infections and overactive bladder.

“Research shows that most patients consult at least five physicians, including psychiatrists, over a period of more than four years before being diagnosed with interstitial cystitis. This is devastating. No one should have to suffer in silence for so long,” adds Wysocki. “By increasing awareness of the three symptoms most commonly associated with IC – Pain, Urgency, Frequency – which we call ‘the 123 of IC’, we aim to help people ask ‘could it be IC?’ sooner.”

Treatment approaches differ from one patient to the next, but most IC patients find success with a combination of dietary modifications and medication. IC patients should avoid acidic foods and drinks as well as carbonated, caffeinated, and alcoholic beverages. Others have success with medical therapies like ELMIRON® (pentosan polysulfate sodium), the only FDA-approved oral medication to relieve the bladder pain or discomfort associated with IC. In addition, medications to ease pain, reduce night-time bathroom visits, aid in sleep, and block the effects of allergens may also benefit IC patients.

New ways to connect a small determined patient community

Given the complications of getting diagnosed, IC patients have gone online in large numbers in recent years, seeking support and information from other patients. There are currently hundreds of national and state-based IC support groups online as well as groups on MySpace, Facebook, Revolution Health, DailyStrength, and many other online communities.

“Providing access to information is the number one way to ensure that IC patients get the support they need,” says Jill Osborne, founder of the Interstitial Cystitis Network and the first to recognize the IC community’s need for online support and information. “The ICN is really pleased to be a part of IC Awareness Week 2008 – a week full of online videos, webinars, podcasts, and other digital communications, with important information on how to diagnose, treat, and live with IC. This would not have been possible five years ago.”

IC Week 2008 activities started in September with a grassroots viral campaign to spread awareness of ‘123 IC’. The campaign attracted almost 1300 signatures to the petition of support and encouraging words from 389 patients across 45 states.

This week, NPWH, ICN, and Ortho Women’s Health & Urology™ invite you to participate in the following activities:

Monday, October 20
• PBS “Healthy Body, Healthy Mind: Interstitial Cystitis” special begins to air nationally. Check local listings for more information
• 123 IC contest winners & 2008 IC Ambassadors announced on www.AllAboutIC.com
• Updates to All About Interstitial Cystitis groups on Facebook and MySpace

Tuesday, October 21
• IC Week Podcast: “Interstitial Cystitis 101” on www.AllAboutIC.com

Wednesday, October 22
• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on www.AllAboutIC.com

Thursday, October 23
• IC Week Podcast: “When the going gets tough, Don’t let IC isolate you!” with ICN’s Jill Osborne on www.AllAboutIC.com

Friday, October 24
• Check out real patient stories and encouraging words on www.AllAboutIC.com

For more information, please visit: www.AllAboutIC.com
Ortho Women’s Health & Urology™ is a Division of Ortho-McNeil Pharmaceutical, Inc. AllAboutIC.com is published by Ortho-McNeil Pharmaceutical, Inc.

About NPWH
The National Association of Nurse Practitioners in Women’s Health was founded in 1980. NPWH’s mission is to assure the provision of quality health care to women of all ages by nurse practitioners. To this end, NPWH works with a wide range of individuals and groups within nursing, medicine, the healthcare industry and the women’s health community.

About ICN
The ICN is an online resource owned and managed by Jill Osborne. The goal of ICN is to provide valuable and timely information and support resources for patients, physicians and researchers who are working to further the IC cause. ICN currently reaches more than 300,000 IC patients each month.

* Ortho Women’s Health & Urology™ is the sole sponsor of Interstitial Cystitis Awareness Week 2008. NPWH and ICN were provided funding to cover the time related to their involvement in these program activities to raise awareness of IC.

About Ortho Women’s Health & Urology™
Ortho Women’s Health & Urology™, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., is a leader in the fields of women’s health and urology, celebrating more than 75 years of partnering with women. Ortho Women’s Health & Urology™ is committed to helping people live healthier lives and to provide products to help meet the needs of healthcare professionals and patients. For more information on these products, birth control, bladder health or general women’s health issues, please visit www.orthowomenshealth.com.

What’s the worst that could happen after eating a slice of pepperoni pizza? A little heartburn, for most people.

But for up to a million women in the U.S., enjoying that piece of pizza has painful consequences. They have a chronic bladder condition that causes pelvic pain. Spicy food — as well as citrus, caffeine, tomatoes and alcohol — can cause a flare in their symptoms and intensify the pain. Researchers had long believed the spike in their symptoms was triggered when digesting the foods produced chemicals in the urine that irritated the bladder.

A surprising new discovery from Northwestern University’s Feinberg School of Medicine reveals the symptoms — pain and an urgent need to frequently urinate — are actually being provoked by a surprise perpetrator. It’s the colon, irritated by the spicy food, that’s responsible. The finding provides an explanation for how the body actually “hears” pelvic pain.

The discovery also opens up new treatment possibilities for “painful bladder syndrome,” or interstitial cystitis, a condition that primarily affects women (only 10 percent of sufferers are men.) During a flare up, the pelvic pain is so intense some women inject anesthetic lidocaine directly into their bladders to get relief. Patients typically also feel an urgent need to urinate up to 50 times a day and are afraid to leave their homes in case they can’t find a bathroom.

“This disease has a devastating effect on people’s lives,” said David Klumpp, principal investigator and assistant professor of urology at the Feinberg School. “It affects people’s relationships with family and friends.” Klumpp said some women who suffer from this become so depressed, they attempt suicide.

Klumpp conducted the study with postdoctoral fellow Charles Rudick. The paper is published in the September issue of Nature Clinical Practice Urology.

The Northwestern researchers discovered the colon’s central role in the pain is caused by the wiring of pelvic organ nerves. Nerves from this region — the bladder, colon and prostate — are bunched together like telephone wires and plug into the same region of the spinal cord near the tailbone.

People with interstitial cystitis have bladder nerves that are constantly transmitting pain signals to the spinal cord: a steady beep, beep, beep.

But when the colon is irritated by pepperoni pizza or another type of food, colon nerves also send a pain signal to the same area on the spinal chord. This new signal is the tipping point. It ratchets up the pain message to a chorus of BEEPEEPBEEPBEEP!

“It was known that there was cross talk between organs, but until now no one had applied the idea to how pain signals affect this real world disease, how the convergence of these two information streams could make these bladder symptoms worse,” said Klumpp, who also is an assistant professor of microbiology-immunology at the Feinberg School.

The findings suggest the bladder pain can be treated rectally with an anesthetic in a suppository or gel. Another possibility is an anesthetic patch applied to pelvic skin. Studies in back pain show anesthetic patches applied to the skin can reduce back pain, Klumpp said.

“We imagine a similar kind of patch might be used to relieve pelvic pain, which might be the best solution of all,” he noted.

HOW THEY “CAUGHT” THE COLON

For the study, Klumpp and Rudnick created a model of a mouse that mimicked an inflamed bladder with pelvic pain. Then they injected lidocaine into the bladder. The pain vanished. Next they injected lidocaine into the uterus. There was no diminishment of the pain. Lastly, they tried lidocaine in the colon.

“In the colon it knocked down pain just as effectively as if we put it in the bladder. We thought if the colon can suppress bladder-associated pain, maybe it can make it worse in the way that foods irritate bladder symptoms,” Klumpp explained.

So, Klumpp injected a small dose of red pepper into the colon of a normal mouse. The injection didn’t provoke any pain. But then he injected a small dose into a mouse with pelvic pain. The pelvic pain worsened.

“We likened it to what happens to humans,” Klumpp said. “Pepperoni pizza does nothing to most people other than heartburn, but when you give it to a person with an inflamed bladder, that will cause their symptoms to flare because the nerves from the bladder and bowel are converging on the same part of the spinal cord.”

MEASURING PELVIC PAIN IN A MOUSE

When pain emanates from a visceral organ, the pain message is delivered to the spinal cord and bounces out to the corresponding skin surface, called the dermatome. To measure pelvic pain in the mice, Kumpp prodded their pelvic skin with nylon filaments of varying thickness and stiffness, beginning with one that was as thin as a human hair. The more pelvic pain the mouse was experiencing, the more sensitive its pelvic skin to even the finest filament.

Source: Marla Paul

Northwestern University

This is yet another reason, if not proof, that Chinese manufacturers appear to place $$ higher than public health and safety. That ANYONE would be foolish enough to put melamine into a human consumable.. this AFTER how many hundreds of pets were killed last year by the same contaminant… is just shocking. I remain appalled and completely unwilling to trust any consumable product from China. Eat them at your own peril!

The real question, though, is how will China punish these individuals now that Chinese citizens have died. Then, based upon that, how should they treat those who added fake heparin to create the massive recall earlier this year that resulted in many more human fatalities. - Jill

FDA issued a Health Information Advisory to consumers and healthcare professionals regarding milk-based infant formula manufactured in China. The Chinese manufactured infant formula may be contaminated with melamine. Melamine artificially increases the protein profile of milk and can cause kidney diseases. Currently, no Chinese manufacturers of infant formula have fulfilled the requirements to sell this product in the United States. FDA officials are investigating whether or not infant formula manufactured in China is being sold in specialty markets which serve the Asian community. Caregivers should not feed infant formula manufactured in China to infants and should replace any product from China with an appropriate infant formula manufactured in the United States. Individuals should contact their health care professional if they have questions regarding their infant’s health or if they note changes in their infant’s health status.

Read the entire 2008 MedWatch Safety Summary, including a link to the FDA Health Information Advisory regarding the above issue:

http://www.fda.gov/medwatch/safety/2008/safety08.htm#formulaChina

NIH Launches Effort to Advance Study of Urologic Chronic Pelvic Pain DisordersThe National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), announces awards to eight academic research centers to conduct collaborative studies of urologic chronic pelvic pain disorders by looking for clues outside the bladder and prostate. The total research investment for the five-year project is estimated to be up to $37.5 million.

“The launch of this novel research effort is an excellent example of NIH’s commitment to encouraging translational research,” said NIH Director Elias A. Zerhouni, M.D. “It also illustrates NIH’s leadership in furthering innovative approaches to discovering effective new therapies to help our patients.”

The Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network includes six Discovery Sites that will conduct the studies and two Core Sites that will coordinate data collection, analyze tissue samples, and provide technical support. The Discovery Sites are at: Northwestern University, Chicago; the University of California, Los Angeles; the University of Iowa, Iowa City; the University of Michigan, Ann Arbor; the University of Washington, Seattle; and Washington University, St. Louis. Core Sites are at the University of Colorado, Denver and the University of Pennsylvania, Philadelphia.

The MAPP initiative is unusual in requiring investigators to conduct highly collaborative research of the most common urologic chronic pelvic pain syndromes from a broadened systemic perspective. This is a major shift from earlier organ-specific research on the two most prominent urologic chronic pelvic pain disorders, interstitial cystitis/painful bladder syndrome, and chronic prostatitis/chronic pelvic pain syndrome.

“The MAPP Network’s expanded scientific approach will address many persistent questions about urologic chronic pelvic pain,” said NIDDK Director Griffin P. Rodgers, M.D. “Knowing whether there are risk factors common to all the disorders and whether clinical profiles can be identified for each will provide invaluable, fundamental information for developing treatment strategies.”

The innovative shift in research focus represented by the MAPP initiative is supported by recent epidemiological studies showing that interstitial cystitis/painful bladder syndrome and chronic prostatitis/chronic pelvic pain syndrome are frequently associated with other chronic pain disorders such as fibromyalgia (chronic pain of unknown origin), chronic fatigue syndrome, and irritable bowel syndrome. These latest findings suggest the possibility of common underlying disease processes in these chronic disorders.

“The bladder was assumed to be the origin of the interstitial cystitis/painful bladder syndrome symptoms and the prostate was assumed to be the source of chronic prostatitis/chronic pelvic pain syndrome symptoms,” explained Leroy M. Nyberg Jr., M.D., Ph.D., the NIDDK urologist heading the program. “However, in spite of intense study funded by NIDDK, no organ-specific cause has been identified for either disorder.”

The MAPP research effort is expected to lead to critical new insights into the underlying causes of urologic chronic pelvic pain. Widening the scope of research will be bolstered by the perspectives of project leaders not normally involved in urologic pelvic pain studies, but who have expertise in relevant scientific disciplines. This will expand the context in which research into interstitial cystitis/painful bladder syndrome and chronic prostatitis/chronic pelvic pain syndrome occurs and will encourage a more comprehensive approach to understanding chronic pelvic pain.

Scientists at Discovery Sites will conduct individual and collaborative multi-site research projects, supported by each Core Site. An important first step in these studies will be the careful and extensive phenotyping (clinical characterization) of the men and women participating in the studies.

The Data Coordination Core (University of Pennsylvania) will provide overall administration and coordination of multi-site research studies and perform data analyses.

The Tissue Analysis and Technology Core (University of Colorado) will bank, analyze, and distribute biopsy, serum and urine samples. Tissue analyses will help in the search for biomarkers, important in screening for diseases and for monitoring treatment outcomes. The Colorado Core Site also will perform genomic and proteomic tissue expression analyses which may lead to new treatment approaches and help predict which patients may respond to these treatments.

In addition to initial collaborative projects by the Network, MAPP investigators will be invited to propose ancillary research projects to further the goals of the collaborative study group. Proposals will be reviewed for scientific merit and feasibility by an external Scientific Advisory Committee.

For more information on the MAPP Research Network, visit http://www2.niddk.nih.gov/Research/ScientificAreas/Urology/MAPP.

NIDDK conducts and supports research in diabetes and other endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic, and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans. For more information about NIDDK and its programs, see www.niddk.nih.gov.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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 just last week. 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 quickled googled it and was floored to see that it was well known for causing, you guessed it, neck and tongue tremors, along with severe depression and anxiety. 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 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 websites 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.