Dr Payne Lectures At ICS 2016

Thank you very much, and especially thank you to the audience for being here. Today we have an opportunity to change the way we take care of patients, research, and talk about this disease. And we don’t need to wait for the ICI, we don’t need to wait for ESEC, and we certainly don’t need to wait for the AUA.

By this time I think we all recognize this is a serious problem. It’s a recognizable disease and it needs to be treated seriously. This is Ulcerative Interstitial Cystitis. We made a bad mistake in the 1970’s. We made a hypothesis, an assumption that it was related to a different condition vemerialations and bladder pain. That turns out now to be completely wrong. And because of that, they did IDK criteria on which we based our research, our conversation, our patient treatment, this is also completely wrong. We now know with the best literature, after 40 years of study, that there’s no convincing evidence that vemerialtion should be included in the either the diagnosis or phenotyping of BPSIC. So it is time to start over. This is what I’ve been writing about and talking about for a while. Taking ulcerative interstitial cystitis back as a separate disease and approaching it with the seriousness of an oncologist. And what I’d like to focus today’s discussion on is the idea of remission. If we don’t think about remission, we won’t achieve it. So I’m offering a definition of complete remission. No evidence of disease, no pain, normal bladder capacity, no other symptoms such as food intolerances, disperinnhea, ejaculatory pain, etc. And I’m defining surgical outcomes because at least at present Ulcerative IC is a surgical disease. Complete remission, they need to meet all those criteria. Partial remission, their pain scores must be zero, off of pain meds, but they may have other symptoms or a low functional bladder capacity. Improved means they’re pain is not zero, but they had at least 50% improvement. That’s a typical cancer diagnosis when you’re looking at tumor response. And failure less than 50% improvement and pain. These are my last 21 patients. As you can see my results are very similar when reading the literature. The vast majority of patients had improvement with surgical treatment, 70%. However, only 14% met criteria for complete remission. So our opportunity is the difference between 70% that we used to say is success and 14% which is our real success, people that actually at least temporarily achieve complete remission. This is our opportunity to identify adjument and neoadument therapies that will help our patients. I’m not saying that what I brought today is written in stone like Moses bringing you the answer, that’s not true. What I am trying to be is more like John the Baptist in the wilderness saying we’ve been doing it wrong, here’s a different way, and let’s work together to solve this problem. And with that I’ll take questions, and hope that I don’t end up like John the Baptist.

Applause

Thank you very much. Any questions or comments from the audience?

Hi, I’m Arakin from South Korea. You mentioned a very good interesting pointing to remission. But as we know, the major problems, the pain and frequency in IC patients, I like to think of the inclusion in the frequency in the criteria.

So my criteria, in order to be in complete remission, you have to have normal bladder capacity. And I arbitrarily picked 400 cc’s as a bladder capacity on a bladder diary to show you that the patient was in complete remission. So the frequency becomes not as relevant if you know what the functional capacity is. I know who’s next.

Next one.

Kate Moore from Sydney, thank you very illuminating sort of paradigm shift, talk. I’d just like to be a bit of a devil’s advocate. Over the past 20 years or so I find that the more that I diathermy. People with Hunter’s ulcer IC, I feel that their bladder capacity does tend to relentlessly decline. And I’m worried that the actual diathermy is causing fibrosis and reducing bladder capacity. So, I’m not sure that we should accept that total remission is necessarily a normal bladder capacity, but that they function in their daily life, that are they not sort of relentlessly driven to the toilet.

I’d like to respond to that in 2 ways. First, while some people do progress with loss of bladder capacity, I’m hypothesizing it’s due to the severity of the underlying disease, the activity of the inflammation and not the diathermy. Secondly, I would say that when a patient does have a low bladder capacity, under anesthesia, you may be correct, maybe that patient can’t achieve complete remission. However I have cases where it’s happened. Patient with a 275 under anesthesia after treatment, bladder training, cyclo sporin is over 400. If we don’t acknowledge the possibility that it can happen, we won’t see it.

OK

Next short question, please.

Hi, Ken Peters from Michigan. Chris, I agree completely with what you said. I think it is a completely different disease. In commenting about the complete remission, I mean it is a difficult patient population to do that because when we looked at diathermy, we looked at did the number of diathermies impact bladder capacity, whether they had one or you had ten, the answer was no. During their first hydradistention, most of these patients had less than 300 cc’s before anyone touched their bladders. So it’s probably the disease. The only I know that I’ve seen in the literature, and I’ve seen clinically, is cyclosporin over time seems to have some type of positive impact on bladder capacity. Do you use it and have you seen something similar?

I agree that people who respond to cyclosporin, can not only see relief of their symptoms but improvement in bladder capacity. We’ve seen that.

Just short questions.

Jeremy Huckabee in London. Just to clarify, what do you mean by surgery? Are you talking about ressecting the Hunter’s ulcer? Are you talking about diathermy?

Well, of course if we would acknowledge this is a disease, that could be studied. I do only cauterization pulveration. But of course laser’s been proposed, resection’s been proposed. We could actually study and see if one of those has a better treatment effect.

Is the purpose , this surgery, the purpose to remove the interstitial layer, is that what you are trying to achieve?

I think that is probably correct in that we’re killing nerve terminals and allowing the chance for potentially healing over top. I can’t say I know how it’s working, only that obviously in many people’s hands using many different techniques, surgery does work for a period of time.

Thank you.

Last question.

From Taiwan. It’s a very good point for the management of IC. But as we know IC is a chronic disease, and when time goes by, the patient has a tendency for so-called upper, up centralization. So in your opinion, you tuck in? Just many focus tuck operate, and how about seeing this problem. In your series.

So if I understand Dr. Lee is asking about central sensitization and up regulation in these patients, is that correct?

Yes

Look, I think this is something that’s important to think about but what we’ve been kind of telling is “oh you have central sensitization, now you’re incurable.” We have patients who when they have ulcers, and they’re on Fentanil patch, and you treat them and they come back for their post-op visit and they have no pain and they’re off their Fentanil patch. So, if it is central sensitization it’s still reversible when you treat this acute injury. I mean we wouldn’t not drain an abscess, because it’s chronic and the patient has chronic pain. We’d still treat the treatable condition. And that’s the difference between ulcerative interstitial cystitis and bladder pain. We have a focus of inflammation and pain that’s treatable.

Sorry we’re running out of time. Thank you for the discussion. Thank you very much.