Interstitial Cystitis Network - Chat Log (www.ic-network.com)
Date: November 14, 2000   
 Topic: An update of on Bacillus Calmette Guerin.
Speaker: Dr. Ken Peters, Beaumont Hospital, Royal Oak Michigan
Moderator: Jill Osborne, ICN Founder

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(icnmgrjill) Welcome to the ICN "Meet the IC Expert" chat for November 14, 2000. Tonight, we welcome Dr. Ken Peters of Beaumont Hospital in Royal Oak Michigan. Dr. Peters did a wonderful chat for us last year on the groundbreaking research using Bacilllus Calmette Guerin (BCG) as a possible treatment for IC. He comes back to us tonight to give an update on BCG information, as well as to talk about his impressions on the US National and IC Bladder Symposium that we attended three weeks ago.

(icnmgrjill) Before we begin, I need to remind you of our disclaimers. Responsible IC patients understand that medical information received online cannot be considered personal medical advice. If you hear anything interesting that you would like to pursue, please talk with your personal physician about the pros and cons of that treatment. On your physician can and should give you medical advice.

(icnmgrjill) Welcome Dr. Peters!

(drpeters) Hi everyone! Thank you for the invite to speak tonight. I apologize in advance for my typing.

----------------------------- Q&A Begins -----------------------------------

(icnmgrjill) Can you share with us what is happening with BCG?

(drpeters) As you know I have been working with BCG for the treatment of interstitial cystitis for several years. BCG is a weakened strain of the Tuberculosis bacteria. It is know to stimulate the immune system in the bladder and has been used for years for the treatment of bladder cancer. I have used it successfully in treating IC and I suspect it is effective by changing the bladder immune system. To understand more about BCG please refer to my previous chat.

(icnmgrjill) Last year, a national clinical trial was underway to test BCG in a nationwide sample. But, there were some problems with the management of the trials and they were ceased two months ago. Are they rescheduled?

(drpeters) A national trial on BCG was recently stopped due to poor enrollment. This was due to several factors, mostly regulatory in nature. The trial was not stopped due to efficacy of the treatment. We hope to have another trial up and running after the New Year.

(icnmgrjill) This doesn't mean that there were problems with the BCG itself, right?

(drpeters) That's correct.

(icnmgrjill) It is always encouraging to see preliminary research results which show a possible effective treatment for IC. The BCG studies appear promising and, given the fact that it has been used for bladder cancer extensively, there is quite a bit of safety information available on the drug.

(drpeters) I remain very excited about BCG as a treatment for IC, however it should be considered experimental at this time. I still recommend that it be studied further in clinical trials. Patients interested in pursuing BCG should consider becoming involved in the national trials.

(icnmgrjill) Don has the first question. Is BCG safe to use with people who have Hunner's Ulcers?

(drpeters) BCG can be used safely in patients with Hunner's ulcers. No BCG should be administered if there is active bleeding. Active bleeding means visable blood in the urine not under the microscope.

(icnmgrjill) You mentioned, during your presentation at the conference, that patients taking Elmiron or Lidocaine should not use BCG. Why?

(drpeters) Elmiron binds BCG and prevents its binding to the bladder and Lidocaine kills the bacteria.

(icnmgrjill) You told a story about "poison ivy" story that was very interesting. Could you share that again?

(drpeters) I had a patient who was almost 3 years from receiving her BCG and was in complete remission. She developed poison IVY and was treated with steroids. Now we know that steroids affect the immune system. While on the steroids all of her IC symptoms returned. I retreated her with BCG and her bladder symptoms ultimately improved although she suffered from joint pain for 3 months. This suggested to me that the immune system likely plays a role in IC and I am looking forward to completing a study on over 500 IC urines studying the immune profile pre and post BCG.

(icnmgrjill) Is it okay for a patient with diabetes to use BCG?

(drpeters) Yes

(icnmgrjill) One of the problems with BCG though is that some people just get concerned that it involves a tuberculin deactivated bacteria. Can you address their concerns about this?

(drpeters) Certainly BCG has had severe complications reported in the treatment of bladder cancer, the majority of these are in our early experience using BCG and it is very rare if used appropriately to cause significant complications. We have had no serious problems in our IC population.

(icnmgrjill) Let's move on to the big national conference. What were your overall impressions and did anything specifically excite you?

(drpeters) I always think it is great to get together with a group of physicians who all have an interest in IC. I always find this situation very intellectually stimulating. I am most excited about the antiproliferative factor found by Dr. Warren and Dr. Keay. This may be a great marker for the disease and also has implications on the cause of IC. I believe by demonstrating this protein is present in 90% of IC patients and very few with other Urologic diseases, it gives credibility to the IC patient that cannot be disputed.

(icnmgrjill) One of the things that I found most interesting was a discussion of the various pain mechanisms for IC, including inflammatory pain versus neuropathic pain. What did you think of that? And does this explain why patients respond so differently to various treatments... i.e. opiates versus antidepressants?

(drpeters) I do not think there is always a clear delineation between these types of pain. Certainly inflammation in the bladder will lead to up regulation of painful nerve fibers which transmit the pain sensory to the spinal cord. Up regulation means the pain fibers get turned on and because of the continuous inflammation do not get turned off. This can lead to a central pain ie. pain that is sensed by the spinal cord even if the organ ie. bladder is removed.

(drpeters) Neuropathic pain can often be treated with central medications such as neurontin. I have been using a newer medication called Zanaflex which is a skeletal muscle relaxant and is used in Multiple Sclerosis. This has been found to be effective in many chronic pain disorders but has not been studied in IC.

(icnmgrjill) The next question is from Paula: "I think I might have IC: frequency/urgency,mild spasms (with no infection/bacteria detected). However, I don't have the pain described by everyone else. How often do you see IC patients without the intense pain in the bladder? Thank you."

(drpeters) I believe that many IC patients do not have INTENSE pain in the bladder, rather a feeling of pressure as if someone is sitting on the bladder. In your case you would want to rule out an overactive bladder that often can be treated with anticholinergics, such as Ditropan.

(icnmgrjill) I agree! I get many calls from patients who just describe pressure. It's almost as if they can't distinguish the two. I think one persons pressure is another persons pain.

(icnmgrjill) Research has shown that there are two distinct groups of IC patients: those who have Hunner's Ulcers and those who have milder petechial hemorrhages (glomerulations). Hunner's Ulcers are considered more severe and painful than the discomfort felt by patients who just have petechial hemorrhages. Why do Hunner's Ulcers develop? Does anyone know?

(drpeters) Research is suggesting that it may be part of an allergic response with an increased level of histamine, but we do not know what comes first. It's like the chicken or the egg. Certainly patients with ulcers suffer more pain and I believe can be benefited with treatment of the ulcers.

(icnmgrjill) We should say that a very small subset of IC patients have Hunner's Ulcers. Which treatments appear to be the most effective?

(drpeters) I previously would hydrodistend a patient and see ulcers or cracks and the bladder and just note that they were there. However, now I treat them by gently cauterizing the ulcers to destroy them and have seen marked improvement in pain symptoms. Others use the laser to do this. Usually the ulcers will return but symptom improvement can last for many months

(icnmgrjill) Is it normal for patients with Hunner's Ulcers or even mild IC patients to have some microscopic blood in their urine?

(drpeters) Approximately 40% of IC patients would have micro blood in the urine and may worsen with a flare in symptoms. However, I would caution that persistent blood demands a worked up for other causes.

(icnmgrjill) Christina asks: What is the current success rate for BCG? Her doctor doesn't believe that it is that helpful.

(drpeters) Unfortunately, we only have our initial data to rely on. In that study 60% of IC patients had marked improvement in symptoms after only 6 weeks of BCG and 90% remained improved 2 years later. I should caution that improvement does not occur for 3-6 months since treatment.

(icnmgrjill) Cricket says that she has eosinophilic cystitis and that her doctor told her that she was not a candidate for BCG because of the large ulcers in her bladder. She asks what BCG does to the bladder lining?

(drpeters) BCG has never been used for this specific type of cystitis (different than the routine IC) so I have no data to know if it would help. We suspect BCG causes sloughing of the bladder lining secondary to its immune/inflammatory response.

(icnmgrjill) Alexa asks: Who does BCG seem to help more? Patients with hunner's ulcers or those with glomerulations??

(drpeters) I feel that BCG helps more the MILD to Moderate IC symptoms. If a patient has a very small bladder capacity under an anesthetic with associated Hunner's ulcers, the success with BCG is likely less.

(icnmgrjill) Can you share with us your approach to treating pain in IC patients?

(drpeters) I feel it is very important to treat the pain associated with IC and I always encourage doctors who are not comfortable with pain management to refer the patient to a physician who is. I have many patients on narcotics for their pain. I prefer Oxycontin which is a slow release, twice a day narcotic that has no acetominophin in the tablet. This takes away the peaks and troughs of pain and can give prolonged relief. However, I strongly feel the disease needs to continue to be treated ie . Elmiron, Hydroxyzine, etc. Other agents I use for pain include Neurontin and Zanaflex. I feel a patient will not respond to standard treatments for IC if the pain is not controlled first. Hopefully, we can then wean the pain meds.

(icnmgrjill) That's a refreshing attitude and so important. I talked with a patient today who had never been given pain meds and she was crying at work because sitting was so difficult. It's fair to say that if pain is preventing a patient from performing an essential life function, like working or driving or shopping or going to church, then it's important to ask for help for that pain.

(icnmgrjill) Folks...Dr. Peters has been up since early this morning and we're going to let him go now. Thank you Dr. Peters. You were great and we so appreciate your time this evening. Thank you for caring enough about patients to be really involved in the IC movement. We look forward to hearing about your next research successes!

 

----------------------------- Q&A Ends -----------------------------------

Related Websites of Interest:

Bacillus Calmette-Guerin (BCG) Treatment Studies

University of Maryland begins NIH-funded clinical trial for interstitial cystitis
Make a donation for IC research through the NIDDK gift fund

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The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $14.95/$12.00 for ICN Subscribers

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