The IC Underground

The National Association of Nurse Practitioners in Women’s Health (NPWH) today announced Wednesday, October 31st as the first annual National Interstitial Cystitis (IC) Awareness Day. To mark the day, NPWH, with support from Ortho Women’s Health & Urology, revealed the results of the first survey of IC patients highlighting their frustration and despair, and new educational resources to help women recognize and manage their symptoms.

To view the Multimedia News Release, go to: http://www.prnewswire.com/mnr/orthomcneil/29748/

Results from the survey, available on AllAboutIC.com, showed that respondents expressed very high levels of emotional distress. Nearly all respondents - 95 percent - felt frustrated from dealing with IC and its symptoms. Most said they had been annoyed or angry (85 percent), 75 percent reported feeling depressed, and more than two thirds (67 percent) felt alone/isolated and embarrassed.

IC is a painful and often debilitating chronic condition where the bladder lining becomes irritated and inflamed causing symptoms such as pain in the pelvis, bladder, back or thighs; an increased need to urinate frequently or urgently; and/or pain during/after sexual intercourse. Research indicates that the number of people who have IC may actually be higher than the current estimate of two million Americans since many people are not appropriately diagnosed and continue to face the daily frustrations associated with IC.

“The face of IC is often hidden because its symptoms often masquerade as other pelvic conditions, making it challenging to accurately diagnosis in a timely manner,” says Susan Wysocki, President and CEO, National Association of Nurse Practitioners in Women’s Health. “It is our hope that National IC Awareness Day will unmask the many faces of IC by elevating awareness about this little-known condition and helping reduce the emotional as well as physical toll that IC can have on patients and families.”

IC can be tricky to diagnose because symptoms are easily mistaken for other urologic and gynecologic disorders, such as endometriosis, recurrent urinary tract infections and overactive bladder. As a result, it can take years and numerous visits to multiple healthcare professionals to achieve a correct diagnosis. In the survey, more than half of the respondents (58 percent) said their IC diagnosis took a year or more. More than half (56 percent) also said they had seen three or more healthcare professionals before their diagnosis.

IC Patient Ruthann Auten knows first-hand the frustration of a delayed diagnosis. “I was frustrated and upset by the frequent pain I experienced in my pelvis, and didn’t feel well enough to participate in a lot of the activities I used to enjoy,” says Ruthann. “It was hard to stay positive during the time it took to diagnose my pain as IC. I felt overwhelmed trying to manage the chronic pain, while finding a doctor who would correctly diagnose me.”

There are new resources available on AllAboutIC.com to help people like Ruthann. IC sufferers can see the “Unmasking the Many Faces of IC” collage, read their inspiring testimonials and find an IC specialist in their area. A link to a new patient brochure offers information on the condition and tips to help manage symptoms.

“In addition to suffering from painful physical symptoms, people with IC often experience psychological and social problems. It is sad, but not surprising, to hear that one third of the IC patients in our survey said it had been suggested to them that their condition may be psychological, and one fifth said they had been directed to seek psychological help,” says Wysocki. “This survey underscores the need for greater education so that IC is considered earlier in the diagnostic process and women can receive the treatment they need to relieve their painful symptoms.”

In the past, IC has traditionally been difficult to detect because there is no definitive test for the condition. However, once diagnosed, it can be successfully managed and symptoms can start to be relieved. A multi-faceted treatment approach may provide the greatest symptom control for people with IC. This approach involves a correct diagnosis, dietary modifications and medical therapies like ELMIRON(R) (pentosan polysulfate sodium), the only FDA- approved oral medication to relieve the bladder pain or discomfort associated with the condition. Other medications, such as therapies to ease and control pain, reduce night-time bathroom visits, aid in sleep, and block the effects of allergens, may also benefit IC patients.

Ortho Women’s Health & Urology is a Division of Ortho-McNeil Pharmaceutical, Inc. AllAboutIC.com is published by Ortho-McNeil Pharmaceutical, Inc.

About NPWH

Federal Interstitial Cystitis Research Takes A Dramatic New Direction

Is IC/PBS just a bladder condition???
Is prostatitis just a prostate condition???
Why do IC patients struggle with irritable bowel syndrome?

In a move which has many IC patients saying “It’s about time!,” the National Institutes of Health (NIH) has launched a new research network to help uncover the genetic, biological and behavioral relationships between these conditions.

This is a remarkable change of direction for the IC research movement. In past years, the NIH and other funding groups inexplicably “clung” the concept of IC as only a bladder disease despite significant new findings that showed that other conditions could be (and probably are) involved.

Many of the new discussions in the IC research movement are focusing on the concept of neuroinflammation and neurosensitization. It may be that once our body has sustained an injury, perhaps to any organ, it may create a cascade like effect of neurosensitization in nearby organs. IBS and IC, for example, both involve neurosensitization of the nerves in those organs and, in both cases, treatments are focused on reducing stimulation. This could explain why coffee, a well known neurostimulatory agent, exacerbates both IC and IBS. This new study will help determine the relationships, if any, between these conditions including the role of neurosensitization. The new Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network will receive up to $7.5 million dollars a year.

Cellcept is currently undergoing clinical trials as a possible treatment for interstitial cystitis. Any patients participating in the trial should bring this alert immediately to their physician.

Roche and FDA notified healthcare providers that use of CellCept (mycophenolate mofetil) is associated with increased risk of first trimester pregnancy loss and increased risk of congenital malformations, especially external ear and facial abnormalities including cleft lip and palate, and anomalies of the distal limbs, heart, esophagus, and kidney.

Based on postmarketing data from the United States National Transplantation Pregnancy Registry and additional postmarketing data collected in women exposed to systemic mycophenolate mofetil during pregnancy, the pregnancy category for CellCept has been changed from Category C (risk of fetal harm cannot be ruled out) to Category D (positive evidence of fetal risk).

Within one week of beginning CellCept therapy, women of childbearing potential should have a negative serum or urine pregnancy test. In addition, women of childbearing potential (including pubertal girls and peri-menopausal woman) taking CellCept must receive contraceptive counseling and use effective contraception. Healthcare professionals and patients should be aware that CellCept reduces blood levels of the hormones in the oral contraceptive pill and could theoretically reduce its effectiveness. See the Dear Healthcare Professional Letter for additional recommendations for women of childbearing potential.

Read the complete MedWatch 2007 Safety Summary including a link to the Dear Healthcare Professional Letter and revised prescribing information, at:

http://www.fda.gov/medwatch/safety/2007/safety07.htm#CellCept2

Imagine having an implant done. You’re told “You’ll need constant medical care.” You’re told “The Device will need to be adjusted occasionally.” And then your finances became so challenged that you’re forced to go on Medicaid or lose your insurance entirely. Can you still receive care?? Apparently not if you’ve received Interstim and you live in Florida.

One IC patient has tried contacting dozens of doctors to find atleast one who would adjust her Interstim device and they’ve all said that they don’t take her insurance, the state run Florida Medicaid program. She called the Patient Assistance Line and was told that it was her responsibility to find a doctor who would work with her insurance. Well, what is she supposed to do if NO doctors in the state who work with Interstim take Medicaid? So far, every doctor she’s contacted on the Medtronic list has said “No”… though she still has a few more to contact.

I don’t know about you but this infuriates me. If you were a candidate considering Interstim and were told “Oh yeah, if you ever lose your job and your forced to go on Medicaid … no doctor will maintain your device?” would you have it done?? Am I crazy??? Doesn’t the manufacturer have some responsibility in maintaining a diverse list of physician providers that will serve not only rich patients but also the poor??? God forbid a patient lose their insurance entirely. How can they possibly receive care for a device that requires constant care and monitoring.” Clearly, this may be a serious lapse in medical device industry.

Do you have an implant story to share?? Have you had difficulty finding someone to maintain your device?? Have you been discriminated against because you have Medicaid?? Please share your story!

Jill