10-28-2005, 07:50 AM
I know that somewhere before I read articles comparing the pain of IC to the pain of Cancer. Does anyone know where I may find that info?
I am using the Actiq- a fentynl lollipop- for breakthrough pain. My dr. has been giving me coupons since insurance will not cover it without a prior auth. They are working on the auth, but it is difficult because Actiq is supposed to be used for "cancer pain." They are trying to get that label removed, but so far no luck.
I am thinking that maybe if I can get the literature that compares the pain, it may help my case with the insurance company, and I can get the authorization. I know my dr.'s office can not keep giving me the coupons.
10-28-2005, 08:43 AM
Hey Jonee, I know I have seen it too, I will flop about to see if I can remember where and if I find it I'll let you know! I have some ideas.....
10-28-2005, 08:52 AM
Well, here's one reference, it's under the Pain Management section, as the preface to the links..
10-28-2005, 08:54 AM
These might be helpful too...
10-28-2005, 11:33 AM
Was this the one you were thinking of? Hope this helps...
JULY/AUGUST 1996 • VOLUME 6, NUMBER 4
The Pain Facts
Michael Von Korff, ScD, Department Editor
Daniel Brookoff, MD PhD; Vicki Ratner, MD
Interstitial cystitis is a syndrome defined by a triad of chronic irritative bladder symptoms (which can include urinary frequency, urinary urgency, or bladder pain); sterile and cytologically negative urine; and characteristic cystoscopic findings, ranging from glomerulations (pinpoint submucosal hemorrhages that are evident after distension of the bladder) to reduced capacity and ulceration of the bladder (Messing, 1992). For the patients, 90% of whom are women (Koziol, 1994), interstitial cystitis often translates into a feeling of having the worst bladder infection of their lives-and one that will not go away. It may mean having a compelling urge to urinate, up to 80 times in a 24-hour period, and intermittent or constant bladder pain.
In most cases, the diagnosis of interstitial cystitis does not take place until several years after the onset of symptoms. The treatments most commonly used by urologists are intravesicular instillations of medications such as heparin, dimethyl sulfoxide (an antiinflammatory agent), sodium oxychlorosene (a detergent), silver nitrate (a caustic), and chromolyn sodium (Sant & LaRock, 1994). Many of these treatments are themselves very painful. Other treatments include tricyclic antidepressants, mast cell stabilizers, pentosanpolysulfate (which can be likened to an orally bioavailable form of heparin), TENS units, physical therapy, and, ultimately, cystectomy (which may not relieve the symptoms). Often, the symptoms will recur or persist after treatment. Reviews of all these therapies appear in the February 1994 edition of Urologic Clinics of North America.
For many patients with interstitial cystitis, pain is a prominent feature of the disease. For some patients, pain becomes the most prominent feature of their lives. A large epidemiologic study found that 55% of patients with interstitial cystitis reported daily or constant pain, and 57% characterized their pain as severe or excruciating (Koziol, 1994). A study at Duke University reported that patients with interstitial cystitis had an average duration of pain of over 7 years and that this pain was more severe than the pain of advanced cancer (Berwick, 1991), leaving the patients with a lower measured quality of life than that of patients on chronic hemodialysis (Held, Hanno, & Wein, 1990). Nonetheless, textbooks on pain management barely mention interstitial cystitis and give no recommendations for treatment. The literature on pain management in interstitial cystitis is virtually nonexistent (Brookoff, in press).
Even though interstitial cystitis was first recognized near the beginning of this century (Nitze, 1907) and was well described a few years later (Hunner, 1914), medical attention has been paid to this syndrome only relatively recently. For years, patients with interstitial cystitis could not get treatment for their condition. Dimethyl sulfoxide, the first drug for interstitial cystitis, did not receive approval from the Food and Drug Administration until 1978. For most of its history, interstitial cystitis has been dismissed as a condition of hysterical postmenopausal females. A standard urology textbook in use until 1985 stated: “Interstitial cystitis...may represent the end-stage of a bladder that has been made irritable by emotional disturbance...a pathway for the discharge of unconscious hatreds” (Walsh, 1979, pp. 1906-1907). This attitude has led to the delays in diagnosis and treatment that are so commonly seen in patients with this disease.
The Interstitial Cystitis Association estimates that interstitial cystitis affects 450,000 people in the United States (Ratner, Slade, & Greene, 1994). This syndrome may have a variety of etiologies (e.g., urinary toxins, bacterial infections, mast cell disorders), which result in chronic inflammation of the urinary bladder. As such, it is an important model for chronic visceral pain and neurogenic inflammation. The frequent overlap of interstitial cystitis with other chronic pain syndromes such as fibromyalgia, irritable bowel syndrome, migraine head-aches, chronic arthritis, allergies, and noncardiac chest pain suggests that interstitial cystitis may be a localized expression of a systemic disorder (Koziol, 1994).
FIGURE 1. Findings of the First U.S. Epidemiological Study About Interstitial Cystitis
It takes an average of 4.5 years and five physicians to arrive at the correct
For every patient diagnosed with interstitial cystitis, there are five symptomatic patients who have not been diagnosed.
The median age of onset of symptoms is 40; 25% of patients are under 30
years of age.
50% of patients with interstitial cystitis cannot maintain full-time employment because of disease-related disability.
SOURCE: Held, Hanno, & Wein (1990).
Daniel Brookoff is clinical associate professor of preventive medicine in the Department of Medical Education at Methodist Hospital, University of Tennessee, Memphis. Vicki Ratner is president of the Interstitial Cystitis Association (PO Box 1553, Madison Square Station, New York, NY 10159-1553).
Berwick, L. (1991, March). Interstitial cystitis patients may require specialized team care. Urology Times, 1.
Brookoff, D. (in press). The causes and treatment of pain in interstitial cystitis. In G.R. Sant (Ed.), Interstitial cystitis. Philadelphia: Raven Press.
Held, P.J., Hanno, P.M., & Wein, A.J. (1990). Epidemiology of interstitial cystitis. In P.M. Hanno, D.R. Staskin, & R.J. Krane (Eds.), Interstitial cystitis (pp. 7-15). London, England: Springer-Verlag.
Hunner, G.L. (1914). A rare type of bladder ulcer in women: Report of cases. Transactions of the Southern Surgery and Gynecology Association, 27, 257.
Koziol, J.A. (1994). Epidemiology of interstitial cystitis. Urologic Clinics of North America, 21, 7-20.
Messing, E.M. (1992). Interstitial cystitis and related syndromes. In P.A. Walsh, A.B. Retik, T.A. Stamey, & E.D. Vaughan Jr. (Eds.), Campbell's urology (pp. 982-1005). Philadelphia: W.B. Saunders.
Nitze, M. (1907). Lehrbuch der Cystoskopie: Ihre Technik und Klinische Bedeutung. Berlin: J.E. Bergman.
Ratner, V., Slade, D., & Greene, G. (1994). Interstitial cystitis. Urologic Clinics of North America, 21, 1-5.
Sant, G.R., & LaRock, D.R. (1994). Standard intravesical therapies for interstitial cystitis. Urologic Clinics of North America, 21, 73-83.
Walsh, A. (1979). Interstitial cystitis. In J.H. Harrison, R.F. Gittes, & A.D. Perlmutter (Eds.), Campbell's urology (pp. 1906-1907). Philadelphia: W.B. Saunders.
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10-28-2005, 01:17 PM
Thanks, Lori. I was just going to suggest Dr. Brookoff's article. Dr. Brookoff has a better understanding of the pain of IC than any other professional I have met.
10-31-2005, 12:17 AM
Thank you so much- I am going to print this for my dr. to send to the insurance company!!
10-31-2005, 01:01 AM
WOW that was great information ICLORI thanks! I knew that my uro said that my IC and some other pat. with IC pain can be rated as being as painful as cancer pat. I've also read that somewhere, but didn't remember where.
I take the fentanyl patches 50 mg and perocets 10.325 one to two every four hours as needed for breakthrew pain.
How is the fentanyl patches and the lollipops diff. from each other as far as pain mang. goes?
10-31-2005, 01:30 AM
Great, I am glad you found this.. I have printed it up to give to my aunt...
Having a few other disease along with IC can really make your life miserable, there are lots of days I wish I had something more then a darvocet to help my pain... I wish it would actually touch the pain I feel, but.. well it don't.... anywho, this artical is great, and now I know and have it in writting, that the pain can be worse then other diseases..
10-31-2005, 03:44 AM
The lollipops are fentanyl also, but you suck on them. They get absorbed into the side of the cheek, and work very fast for pain. I guess it is the same thing as in the patch, but it is for faster relief- and, used for breakthrough. I do not know if you can use them other than for breakthrough. They come in different strengths. They do work pretty good, but they give me very bad dry mouth. I also like that I can use the same medication that I am using anyway- for breakthrough.
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