Taming Bladder Pain Q&A

You said you had about 350 patients who suffer from interstitial cystitis. So this isn’t really a rare disorder, but is it difficult to diagnose?

Dr. Hurm: It really is difficult to diagnose for the most part, but it isn’t as rare as people would think. It’s a lot more common. According to recent statistics there are at least 450 to 500 thousand people across the country, both men and women, who have the disease.

Do you think it’s hard to diagnose because it mimics a bladder infection?

Dr. Hurm: Yes. In the beginning when the primary care physician sees a patient, it often sounds like a routine bladder infection and continues like that for a while. But it’s the continuation of the symptoms without response to treatment of bladder infections that make the diagnosis possible for a primary care physician.

Does anyone really know what causes this?

Dr. Hurm: There are several causes that are thought to be more significant than others, although over the last 100 years, since we’ve really known about this disease, a lot of people have theorized about it. One of the more important causal relationships at this point in time seems to be an autoimmune phenomenon. We really don’t know the full cause of those underlying disease processes.

Is it equally difficult to treat?

Dr. Hurm: If we had the magic formula, more physicians would probably be ready to make the diagnosis. When you can’t find a successful treatment, you are almost afraid to make that diagnosis and label somebody with something that is difficult to treat. However, there are things that are able to help three-fourths of the people with interstitial cystitis (IC) which may not cure them, but will allow them to live their lives much more comfortably.

This isn’t a life-threatening illness, but it certainly does damage to the person’s quality of life, doesn’t it?

Dr. Hurm: It really does. I should say I’ve never known anyone to die of a problem with IC anywhere in the literature, but sometimes people tell me they wish they were finding their rest in peace because their symptoms are just really driving them to distraction. It is something that in the worst situation really does require a significant amount of therapy to be able to reverse that process.

Have you ever had any patients that committed suicide because of IC?

Dr. Hurm: No, not any of my own patients, but I know about them in reports. Depression is something that can happen when people aren’t getting help for a chronic illness.

What causes the intense pain and need to urinate?

Dr. Hurm: We now know, through electron microscopy, that little pock marks occur in the lining of the bladder, and that the acidity of the urine itself is one of the irritating factors that causes pain, urinary frequency, urgency, getting up at night to urinate. So the irritation of one’s own urine is one of the causes for it — the actual pH of the urine itself. Then there are other substances that would be found in the urine that would be absorbed and cause irritation under the lining of the bladder itself.

Were you actively involved in the study of this drug?

Dr. Hurm: Yes. We’ve been involved with several drug studies and the medication Elmiron seems to be the most promising at this point in time. It was recently cleared through the FDA and is now being widely used. But like any other medication, we don’t know the exact dosage and sometimes we know that people have to be on it longer. So we’re learning how to use this drug steadily as we go through.

What is it about this drug that helps relieve some of the symptoms?

Dr. Hurm: It actually helps replenish the lining of the bladder, and that’s one of the reasons that it takes so much time for it to actually take effect. It may be three to six to even nine months before people get some relief — depending on the stage of the irritation in their bladder. The pock marks need to be filled up with the new lining in the bladder so that the nerve endings and the blood vessels are protected from the urinary drainage itself and any other substances within the urine that might be irritating.

Was this drug originally designed for this condition, or was it something that was around for other purposes?

Dr. Hurm: As I recall, it was about 1950 or so that the Europeans were using Elmiron, or its derivative, as an anticoagulant. Heparin is an anticoagulant that we use in the bladder. And the relationship between a drug like Elmiron, an anticoagulant itself, and heparin has some ties, but we don’t know exactly what at the present time.

Are there any side effects?

Dr. Hurm: It’s a drug that’s taken orally.The side effects usually are seen early. So many people, for whatever reason, might have some sort of irritation with their stomach to begin with. They could get a little bit of nausea or dyspepsia with it. But it’s like any other medication — you can get rashes, you can end up with irritation in a lot of the different systems in the body. But the important thing is that only about three or four percent of people have any sort of adverse reaction. Most of them decide, however, to tolerate some of these things if it’s going to give them relief from their symptoms.

Of the participants who were in your particular arm of the study, what percentage of them would you say actually saw some improvement?

Dr. Hurm: Probably about only 25 to 30 percent of our people, because in our study we were only able to continue it three months for the most part. However, people that we would then keep on wanted to stay on the drug. They usually ended up paying for their own medication and there were people at six months and nine months that taught me that they just needed to be on this drug longer. So the initial study didn’t comprise the length of time that we now know people need to really benefit — six to nine months.

Is Elmiron a cure?

Dr. Hurm: Elmiron isn’t a cure. To date, we really don’t have a cure for interstitial cystitis, but we can help many people and improve their symptoms, their quality of life and get them to understand that this is something they’re going to have to live with the rest of their life, but they’re going to be able to live and hopefully live reasonably.

What should someone with IC be aware of with their diets?

Dr. Hurm: One of the most important things that people come into the office talking about is the cranberry juice — that they’ve been drinking cranberry juice for urinary tract infections, but they can’t get rid of their infection. Cranberry juice is one of the worst things to drink if you happen to have interstitial cystitis. It acidifies the urine just enough to create the symptoms of frequency, urgency and burning that they may have. To counteract the acidity, you want to do something. Orange juice is bad as well. But grapefruit juice actually will help in many circumstances. Other alkalinizing liquids like plain old sodium bicarbonate, Arm and Hammer baking soda, a teaspoon full in a glass of water three times a day can often times clear up really acute symptoms in a matter of 28 to 48 hours — not immediately.

END OF INTERVIEW

Source: Ivanhoe Broadcast News