Interstitial Cystitis Network (http://www.ic-network.com)
Meet the IC Expert Guest Lecture Transcript
Date: June 26, 2001
Topic: An Evening with Dr. C. Lowell Parsons, MD
Moderator: Jill Osborne, ICN Founder
We would like to thank our sponsors, AKPharma (makers of Prelief), and Farr Laboratories (makers of CystaQ) for underwriting this special event.
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<icnmgrjill> Greetings everyone and welcome to the ICN Meet the IC Expert Guest Lecture series for June 26, 2001! It is my pleasure to introduce Dr. Lowell Parsons as our guest speaker this evening. He has treated tens of thousands of IC patients in the past decade, running one of the largest IC clinics in the world. A graduate of Yale University where he earned his MD, Dr. Parsons currently serves as a Professor of Surgery at the University of California, San Diego.
<icnmgrjill> One of the most accomplished IC researchers in the USA, he has conducted a wide variety of clinical studies on the use of Elmiron. For the fourth year running, Dr. Parsons has taught the course on Interstitial Cystitis at the American Urology Association conference, where he has trained thousands of physicians in the latest IC research, treatment protocols and long term care of patients. He currently sits on the Medical Advisory Board of the ICA. Welcome Dr. Parsons!
<drparsons> Thank you and it's a pleasure to be here!
----------------------------- Q&A Begins -----------------------------------
<icnmgrjill> We have so many questions for you. Let's start with one of the biggest issues of all. Do you feel that IC is progressive? This question was submitted by Jojo!
<drparsons> This is a multiple part answer. We have new data currently being reviewed for publication, and some already awaiting publication, that suggest at least one out of five women have clinically active IC (Gynecologic presentation of interstitial cystitis as detected by intravesical potassium sensitivity.,
Obstet Gynecol 2001 Jul;98(1):127-32). What I mean by that is that they void ten or more times per day, usually have pain or symptom flares after sexual intercourse and frequently have chronic pelvic pain.
Eighty percent are followed by gynecologists because of their gynecological symptoms, such as pain with sex. Ninety nine percent are misdiagnosed as endometriosis, pelvic pain, vulvodynia, vulvar vestibulitis, and yeast vaginitis.
We believe that 15 to 20 million women have chronically active disease and are symptomatic all the time with flares. Most of them do not progress past this point.
My answer is that the majority of women do not progress past the middle phase. Only one in 500 probably progress to the advanced stage. Most women with IC go through life with the symptoms I've described (10-15 a day, pelvic pain and symptoms associated with sex). Basically, they learn to live with it without progressing past that point in the timeline.
<icnmgrjill> Tell us more about the stages.
<drparsons> The timeline consists of three general areas of the disease.
Early phase - Patients are usually 16-20 years old when the disease first appears, usually with symptoms associated with perhaps sexual intercourse, previous bladder infections or, even, for no obvious cause. Symptoms may occur for a week or two, three or four times a year and they seem to be relatively well in between flares. These patients frequently do not get worse, though a percentage of these will go to the middle phase of the disease.
Middle Phase - This person is more likely to be anywhere from 22 to 40 years old and have frequency, which they may ignore, of perhaps 10 times or more per day. They may have intermittent or low-grade pain cycles as I've described above, again with sex or their menstrual cycle. IC tends to flare a week before the menstrual cycle, hence their confusion with gynecological symptoms. Here I think we have 15 to 20 million women who are chronically symptomatic. If they were treated at this phase, 90% will lose most if not all of their symptoms, occasionally having problems perhaps during allergy season. Unfortunately, 99% of these patients receive no appropriate diagnosis and no effective treatment.
Advanced Phase - A small percentage of patients will escalate after a number of years to the advanced phase of the disease, where they void very frequently, perhaps fifteen or more times a day. Some experience chronic disabling pelvic pain. There may be 500,000 to a million people in this category.
End Stage - Only a very few go to what we can loosely call end stage, where they experience very severe symptoms. I doubt that there are more than 20 to 40,000 people in the US who would be in this category.
The main message is that if we recognize that mid phase, where there are millions, and treat it properly no advanced stage would be occurring and a lot of people would be leading better lives. There will be a paper coming out in the American Journal of OB-GYN in the next six weeks that documents that 80% of women seeing gynecologists for chronic
pelvic pain have IC.
<icnmgrjill> How about men with IC?
<drparsons> These issues occur in men as well and we see prostatitis as IC. The bladder and urethra get effected and, in men, the prostate becomes effected as well, which is roughly 2 percent of men in the US. Ninety to Ninetyfive percent are treated with antibiotics with no appropriate recognition for the disease being the IC complex. If they were recognized properly and treated correctly, most of them would also improve.
<icnmgrjill> Our next question is from Boots. She asks: "Can someone be diagnosed with IC if, during hydrodistention, no glomerulations were seen?"
<drparsons> It's been known for 70 years that 40% of patients who were hydrodistended do not have glomerulations but clearly have IC. To me, this is an outmoded form of diagnosis. For urologists who are remotely considering a cysto under anesthesia due to the symptoms we described earlier, the patient has a 99% chance of IC. Why bother??? If you pay attention to the numbers I talked about above, not even one person in a thousand today is even cystoscoped for diagnosis. So, again, why bother. It is ancient methodology to diagnose IC and I haven't done it for more than 12 or 13 years.
I may be a little bit different in this regard there are a lot of people who still think it's important. Based upon what we discussed earlier, it seems that 99% of patients won't be diagnosed anyway.
<icnmgrjill> How do you diagnose IC?
<drparsons> It is a clinical diagnosis. I will put any one of my secretaries or nurses who have 45 seconds to talk to a female patient (and probably a male) and their diagnostic accuracy from that short history would be over 97% and I would put them up against any urologist in the world. The point I'm trying to make is that if a female is complaining of urgency, frequency OR pelvic pain - any place in the pelvis.. abdomen.. labia... vaginal... urethra.... symptoms after sex, what else could she have? A simple urinalysis will rule out a plain ole infection, which is actually quite rare. History, urinalysis... brief exam... vaginal tenderness over the bladder. A differential diagnosis at this stage would be: #1. IC, #2. IC, #3. IC, #4. Radiation cystitis (which is obvious from the history)
Tto me, this is the easiest diagnosis to make because we've always approached it that you have to rule out all of these other diseases when, in fact, they rarely occur. Women do not get recurrent bladder infections, one of out 100 at the most (and that's probably an overestimate). The gynecologic diagnosis of endometriosis is similarly incorrect as our current data that's coming out next month demonstrates.
<icnmgrjill> Can a patient be diagnosed with IC who has no frequency, urgency or pain? (Julia)
- At least 20-30% of the patients seeing urologists have urgency, frequency and no pain
- At least 10-15% patients seeing me or another urologist have pain with no urgency or frequency and void maybe 4 times a day.
- 15% of patients are currently seeing gynecologists with only pelvic pain (who we demonstrated to have IC) have no urgency or frequency.<
A diagnosis of IC can be urgency OR pain but most patients will have a combination. The average urologist will see about 5 new patients with IC a week, about 250 a year, and will be lucky to diagnose 20 of them with IC. They will tell the rest of their patients that they have urethral syndrome (which is IC) or recurrent UTI or they are normal as far as they can tell, i.e. that they can't find anything wrong.
<icnmgrjill>The next question is from JMA. She asks: "I had a hysterectomy, rectocele and bladder lift in 1997 and have pain in my abdomen since the operation. Could the surgery have stirred up IC. My gynecologist says it's all in my head."
<drparsons> There are several classic things that make IC flares:
- menstrual cycle
- flying in planes/traveling
- AND any surgery, particularly pelvic surgery, will make it flare.
In general, if a woman has a hysterectomy, say for bleeding, and shows up with severe IC symptoms after the hysterectomy (not uncommon), she generally had symptoms before the hysterectomy but has learned to live with them. She thinks volding 12 times a day is normal because she's come to live with that. She's always thought a little pain with sex is normal when she talks about her sex life with other people. So the surgery makes all of the symptoms severe and obvious.
On occasion, I have seen some patients that were completely normal.. then had pelvic surgery and developed full blown IC. That is most likely related to the surgery. The good news is that they treat just as well as all IC patients if you recognize the problem and make the diagnosis.
I've learned this disease by learning from my patients. If you ask them how the disease developed, what precipitated it, what makes it worse or better and watch how they get better, you can learn much from your patients. By listening, I've learned an enormous number of facts about what causes IC and how to successfully treat it.
<icnmgrjill> Deb asks: "What are your thoughts on IC being autoimmune in nature?"
<drparsons> I think it is extremely rare for IC to be caused by autoimmune problems. I think, most of the time, it is a genetic problem. As we recently published, at least 35% of women have a female relative with this problem. There are probably normal metabolic waste products in urine that are injuring the mucous lining of the bladder on a chronic basis that starts the process off.. that a normal protector in urine, that normally protects this process, is not functioning properly and that's probably the genetic component (the Tamm-Horsfall Protein). That then starts a terrible cascade of leaky bladder lining, absorption of urinary minerals (principally potassium) that stimulates and injures nerves, tissue causing symptoms and, potentially, a progression of the disease in some patients.
<icnmgrjill> What do you think of the many theories of IC being bacterial in nature?
<drparsons> Normal infections of the bladder are rarely present. Antibiotics have been used to treat the bladder for 60 years and there is no data to support their efficacy with IC. Many women will have an average symptom flare of 3-7 days. They may be placed on an antibiotic, seem to improve, and attribute that success to the antibiotic.
There is plenty of data in the literature that shows that you can take the same woman.. treat her with no antibiotic... or an appropriate antibiotic and they all get better in 3 to 7 days because that's the natural flare of IC. In fact, if a woman had a true bacterial cystitis. and took an antibiotic, she would be better in 8 to 12 hours - and not 3 to 7 days.
<icnmgrjill> Melanie asks: "I have an annoying tingling feeling in my bladder, very similar to the needles you would feel if you laid on your arm to long. Is this specific to IC???"
<drparsons> IC can be anyplace. The pain of IC can be any discomfort associated with voiding or holding your urine or even continuous pain that is not associated with voiding. Any woman with pelvic pain of any nature who voids more than 10 times a day and who has pain with sex probably has IC. 29% have no pain with sex. 71% of have associated with sex.
<icnmgrjill> Sue asks: "I have been on Elmiron for 6 months, and basically have improved but I still, occasionally, have flares. When should I consider other treatments."
<drparsons> That's a very practical and common question. If you stay on the Elmiron, six months from now you'll probably have less symptoms and the beauty is that you don't get resistance to Elmiron. The drug is an amazing breakthrough for treating IC and I didn't know four years how effective it was because I had to learn how to use it. The magic to the use of Elmiron is to leave patients on it. At about a year, 70 to 80% of patients will have control of symptoms but they will still have occasional flares.. particularly during allergy symptoms or perhaps a week before their period.
<icnmgrjill> Judy asks "Elmiron at 11 days was discontinued due to headaches, dizziness & intensified bladder symptoms? Try again?"
<drparsons> That's the type of symptom you can get before your menstrual cycle. I would say that Elmiron will not cause IC to flare but if you put 100 people on it and there are five or six women about to enter the week before their menstrual cycle, they will want to blame the therapy because it gives them control over their disease process. It's not the drug. It's a natural flare. Or, for that matter, you could try Atarax or hydroxyzine.
<icnmgrjill> You've also championed the use of hydroxyzine with or without Elmiron. Can you tell us more about your recent observations??
<drparsons> For years now, I've had both drugs and used them extensively in several thousand patients. I would simply summarize by saying that Elmiron is the cornerstone to rebuild the bladder surface but allergies are frequently what is breaking it down and you need hydroxyzine for that. Give me hydroxyzine and Elmiron and I can make 90% of my patients better and keep them better. At least 70% of patients need both medications and they will always need both.
Most of my patients tend to stop the Atarax but they will pay a price if they flare during the allergy. They will take three months to really improve again. One bad allergy flare and they usually listen to me. You only need a low dose hydroxyzine.. 25 mgs at bedtime. I think that it is far more important than Elavil.
<icnmgrjill> What about patients who either have side effects or can't take Elmiron because they are on blood thinning meds?
<drparsons> GI Problems - 90 to 95% of people won't have any problems taking Elmiron but about 5% will have problems.. mostly GI. The most common complaint I get is epigastric distress, acid indigestion. At least half will get improvement if they take the Elmiron out of the capsule and mix the contents with an ounce of water and drink it. Another trick is to take it with a small snack if though we encourage you to take it on an empty stomach. It will still be effective if you take it with a small snack.
Headaches - Another side effect is occasional headache that, again, seems to be related to the capsule. Taking the drug as described above... seems to help. If it's an allergic type headache, hydroxyzine can significantly help.
IBS - The next problem may be people who have IBS. They are afraid that Elmiron will bother them. In fact, it does not seem to effect IBS. If they are worried about it, take it out of the capsule because the capsule has a small amount of lactose in it and that should resolve it.
Hair Loss - Hair loss is the thing that women fear most. They would rather be in agony rather than lose their hair. In fact, hair loss with IC, is quite rare, transient and completely reversible and usually disappears while still on the drug. So, I never have patients stop taking the drug for this reason.
Blood thinning - The package insert on IC is loaded with a warning about it's blood thinning effects. Unfortunately, the package insert was written for the IV form of Elmiron, which is 40 times the dose of an oral pill. The oral medication has no blood thinning effect whatsoever that can be detected. So, I believe that it is completely safe to take with aspirin, motrin and coumadin.
<icnmgrjill> Our next question "Can Elmiron be used along with DMSO or doesn't the DMSO defeat the purpose of rebuilding the gag layer."
<drparsons> They would be fine. If you're going to use DMSO, use Elmiron in combination with it. DMSO works faster at relieving symptoms and Elmiron can maintain you for the longer term.
<icnmgrjill> Our next question is from Jeanne. She asks "What percentage of patients go into remission during pregnancy or get worse? Do you recommend vaginal or c-section deliveries?? Safe medications???"
<drparsons> This is a good question. Let me start by saying that any patient who is considering pregnancy should talk with their personal physician about their medication use and whether to stop or continue their medication. The use of medications during pregnancy is a very serious decision. It's important that you talk with your physician about any concerns that you have.
We've seen that about 80% of women get better during pregnancy. They tend, unfortunately, to flare within a few weeks of delivery but it's easy to treat them. Prior to pregnancy, they are concerned about whether they should stop their medication. I believe that these are safe drugs. I encourage them not to stop them until they have a positive pregnancy test. Otherwise, if they start to develop pain with sex, it will impair their fertility.
For those patients that do flare or do not improve during pregnancy, Elmiron is probably safe orally but I tend NOT to use it. I go to using intravesical therapies Elmiron and Heparin directly in the bladder with a catheter on a daily basis. Patients will self-administer at home. As a practical measure, I have very few patients who require much therapy during pregnancy.
Vaginal delivery is fine. I would only recommend a c-section for other medical emergencies.
<icnmgrjill> What are your comments about the use of herbs and IC?
<drparsons> I really don't know that they have any activity and only very few of my patients experiment with it. So I don't know that they help people. The ones that are really helpful, we've already talked about. The two compounds that people could add to their treatment is Prelief and Polycitrate. Polycitrate binds the potassium in urine which is irritating the bladder. It's not over the counter. The brand names easiest to work with are Poly Citra K crystals or Urocit K. They are non-liquid forms and easy to carry around in their purse.
<icnmgrjill> What dosage of Elmiron do you recommend??
<drparsons> I suggest that women take 200 mgs in the morning and at night. It's easier to take than 3x a day. It's a slightly higher dose.. but that seems to be effective. For severe patients, I use at least 300 mgs twice a day. For males, I never use less than 300 mgs twice a day. All of these are relatively low doses.
<icnmgrjill> Any comments about urogynecologists as opposed to urologists?
<drparsons> Urogynecologists are slowly learning more about IC but may be no better than an experienced urologist. It depends on the doctor.
<icnmgrjill> Is there a drug similar to hydroxyzine that is available over the counter?
<drparsons> As far as I'm aware of, no. Hydroxyzine is not over the counter but it is very inexpensive at about 2 cents a pill.
<icnmgrjill> Carolina asks: "I've been on Elmiron two years at 300 mgs with no success. Should I try 600 mgs??"
<drparsons> Yes, I would try the 600 mgs. I'm glad that you've stayed on it but without more history it's hard to answer. But, I would also consider using hydroxyzine (25 mgs at bedtime) and polycitrate.
<icnmgrjill> Any comments on Cystistat or the new Japanese study?
<drparsons> Cystistat is not available in the US and I've never used it. But it's a drug similar to heparin and Elmiron and we are going to be one of the sites in the US to test it. When I have some experience with it, I can better answer this question.
<icnmgrjill> Thank you Dr. Parsons.
----------------------------- Q&A Ends -----------------------------------
Gynecologic presentation of interstitial cystitis as detected by intravesical potassium sensitivity.,
Obstet Gynecol 2001 Jul;98(1):127-32
The intravesical potassium sensitivity test and urodynamics: implications in a large cohort of patients with lower urinary tract symptoms.
J Urol. 2001 Jul;166(1):158-61.
Dr. Parson's Contact Information:
C. Lowell Parsons, M.D.
Dept. of Surgery
UCSD Medical Center
220 W. Arbor Drive
San Diego, CA 92103-8897
Books & Resources That You can Purchase:
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $14.95/$12.00 for ICN Subscribers
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© 2001, The IC Network, All Rights Reserved.
This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the Interstitial Cystitis Network, and speakers, C. Lowell Parsons and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.