Date: March 2, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Featuring: Dr. Josephine Briggs, NIDDK
Topic: IC Research at the NIDDK
<icnmgrjill> WELCOME EVERYONE. BEFORE WE BEGIN LET ME REMIND YOU OF OUR DISCLAIMER. ONLY YOUR PERSONAL PHYSICIAN CAN GIVE YOU MEDICAL ADVICE. NO WEB SITE, NO EMAIL, NO INTERNET CORRESPONDANCE, OR NO IC CHATS ONLINE CAN, NOR SHOULD, REPLACE THE ADVICE THAT YOU WOULD RECEIVE FROM YOUR MEDICAL CARE PROVIDER. IF YOU DO HEAR ANYTHING OF INTEREST... WRITE IT DOWN, RESEARCH IT IN OUR RESEARCH LIBRARY, AND DEFINITELY TALK IT OVER WITH YOUR DOCTOR...
<icnmgrjill> TONIGHTS SPEAKER IS DR. JOSEPHINE BRIGGS, SHE IS THE HEAD OF UROLOGY AND KIDNEY DIVISION OF THE NIDDK, WHICH SOLICITS RESEARCH APPLICATIONS, ADMINISTERS RESEARCH GRANTS, EVALUATES & IMPLEMENTS RESEARCH, AND GENERALLY ARE OUR HEROES BECAUSE OF THE PROMISING RESEARCH BEING DONE ON IC TODAY. DR. BRIGGS PLAYS A PIVOTAL ROLE, ALONG WITH HER STAFF, PARTICULARLY DR. LEE NYBERG, IN IMPLEMENTING IC RESEARCH. WELCOME JOSIE! THANK YOU FOR VISITING WITH US TONIGHT!
<Dr. Briggs> Thank you for inviting me. We are excited about the prospects of IC research in the coming year.
<icnmgrjill> ALEXA WOULD LIKE TO KNOW WHAT NIDDK STANDS FOR?
<Dr. Briggs> National Institute of Diabetes, Digestive Disease and Kidney Diseases
<icnmgrjill> QUESTION #1. CAN YOU SHARE WITH US THE CURRENT STATUS OF IC RESEARCH TODAY?
<Dr. Briggs> We fund between 7 and 9 million dollars in the investigation of basic bladder physiology and clinical studies of IC. Currently we have a Request for applications for new work, with $2 million dollar committed in the current year. We expect this will yield important studies on the bladder and on approaches to IC
<icnmgrjill> QUESTION #2 HOW DO YOU SELECT RESEARCH PROPOSALS THAT ARE FUNDED, I.E. SUCH AS THE FELINE IC RESEARCH DONE BY DR. BUFFINGTON
<Dr. Briggs> All funding from the NIH must be peer reviewed. This means a panel of experts review the grants and assign priorities.
<icnmgrjill> SO.. THIS MEANS THAT THE PROPOSALS ARE REVIEWED BY A SITTING PANEL OF PHYSICIANS??
<Dr. Briggs> Physicians and scientists primarily review the proposals but sometimes it can include disease advocacy groups... as well...
<icnmgrjill> QUESTION #3: WHAT CAN WE DO TO HELP INCREASE RESEARCH FUNDING?
<Dr. Briggs> Certainly, your members can indicate to your congressman can indicate to your congressman that this is important. Congress is discussing NIH funding right now and the extent to which the public tells them that this is important will help us all.
(Jill's note: SO.. AS WE SAY DURING FLARES AND THE NIGHTS WHEN YOU CAN'T SLEEP. THIS IS A GREAT TIME TO USE YOUR FRUSTRATION AND WRITE A LETTER TO YOUR SENATOR AND YOUR CONGRESSPERSON ABOUT IC.. TELL THEM WHAT IT'S LIKE, HOW IT'S CHANGED YOUR LIFE AND HOW IMPORTANT IT IS THAT THEY APPROVE FUNDS FOR ADDED RESEARCH.)
<icnmgrjill> QUESTION #4 COMES FROM KATHY. SHE WANTS TO KNOW IF THE NIH THINGS THAT THERE ARE TWO OR THREE DISTINCTIVE SUBSETS FOR IC.
<Dr. Briggs> Certainly the disease is very variable. That is clear. I personally rather suspect it is several diseases. The subtypes we can define now may not be the right ones. Some patients flare and then get better. Sometimes, as you know better than I do, it is pretty steady and unremitting. Some patients have bladders with lots of physical signs (petechial hemorrhages & Hunner's ulcers). Sometimes the physical abnormalities are very subtle
<icnmgrjill> WE'VE BEEN TAUGHT TO FOCUS ON NON ULCERATIVE VERSUS.. ULCERATIVE IC (HUNNERS ULCERS) IT'S FRUSTRATING THOUGH FOR PATIENTS WHO HAVE BEEN DIAGNOSED WITH A NEBULOUS DISEASE LIKE URETHRAL SYNDROME. THEY HAVE THE SYMPTOMS BUT DIAGNOSTICALLY, THEY HAVE NO SIGN OF IC.. AND OFTEN ARE TOLD THAT THERE IS NOTHING TO BE DONE FOR THEM. DO YOU THINK PHYSICIANS ARE COMING TO ACCEPT THAT ALL PATIENTS SHOULD RECEIVE TREATMENT?
<Dr. Briggs> It is not very sensible for frustration to be increased just because Doctors don't see what they expect. IC is primarily a symptom complex. Symptoms, and their severity, are the core of the problem. I hope eventually we have enough good treatments for symptoms so doctors (and patients) won't be tied to what they see in the cystoscope. Doctors are also frustrated when they can't help patients. Sometimes this is a similar to the various headache syndromes - which can also be very disabling. I see IC as hopefully moving in the direction of more ways for doctors to treat.
<icnmgrjill> THANKFULLY, WE DEFINITELY HAVE MANY MORE TREATMENT OPTIONS FOR IC NOW.. AND ONE OF THOSE OPTIONS FOCUSES ON THE USE OF ANTIBIOTICS. IT HAS BEEN A SIGNIFICANT DEBATE ON THE INTERNET ABOUT WHETHER IC COULD ACTUALLY BE CAUSED BY A FASTIDIOUS, THEREFORE DIFFICULT TO CULTURE, INFECTION? WHAT IS YOUR OPINION ON THIS??
<Dr. Briggs> Treat symptoms...this is a very good hypothesis. It is my own suspicion is that is likely that a difficult to culture organism accounts for some proportion of symptoms in patients with IC. I don't think it explains the entire disease, however, there have been surprises. Ten years ago, nobody thought ulcers were caused by bacteria except for one man in Australia and he turned out to be right. 30-50% of stomach ulcers are caused by a bacterium so that shows that the best guesses can be wrong and it might be true here too. This is very important in IC. I think a trial of antibiotics is reasonable for some patients... at some point in time.
<icnmgrjill> THIS MOVES ALONG TO OUR NEXT QUESTION.. WHICH IS THE DANGER OF PATIENTS WHO HAVE, FOR YEARS, TAKEN LOTS OF ANTIBIOTICS BY DOCTORS WHO DIDN'T BELIEVE IC... AND OUR WORRY ABOUT THE DEVELOPMENT OF RESISTENT INFECTIONS AS WELL AS THE DANGER OF JUST TAKING ANTIBIOTICS FOR A LONG TERM. ANY SUGGESTIONS ON CLEARING UP THIS CONFUSION THAT IC PATIENTS FACE?
<Dr. Briggs> Well.. this is a very good subject for research and should be evaluated first. Antibiotics are good if you know what you are treating. With IC, we don't know that so... the choice of antibiotics and the length of treatment is pretty arbitrary and based upon your physicians personal guidance.
<icnmgrjill> NEXT QUESTION IS ABOUT BRAIN FUNCTION. THERE HAS BEEN SOME INTERESTING RESEARCH RESULTS NOT ONLY IN SOME IC RESEARCH BUT ALSO IN IBS AND FIBROMYALGIA LEADING TO SOME THOUGHT THAT THERE MAY BE A NERVOUS SYSTEM/BRAIN COMPONENT INVLVED ANY COMMENTS ON THIS??
<Dr. Briggs> I think it's an extremely interesting idea. People vary a lot in their stress responses. People vary a lot in their threshold for somatic pain and by understanding that variability and understanding what activities pain sensitivity in IBS, fibro or IC, may help us develop better treatments and understand all these conditions better. The same issues are being raised in migraines as well.
<icnmgrjill> ANOTHER QUESTION... CAN YOU TELL US WHAT THE DIFFERENCE BETWEEN PAINFUL BLADDER SYNDROME AND IC IS?
<Dr. Briggs> Some people would use the term IC if there are Hunner's ulcers, petechia. They would use painful bladder syndrome if there aren't physical signs. Some use IC for the whole thing and some use painful bladder syndrome for the whole thing.
<icnmgrjill> DO YOU BELIEVE THAT TRIGONITIS IS A DIFFERENT DISEASE?
<Dr. Briggs> I don't think it is a different disease. I believe that it is a real condition and is part of the IC syndrome.
<icnmgrjill> ANOTHER QUESTION: HORMONES AND IC?? ANY CONNECTION??? IS THE RESEARCH SHOWING ANYTHING?
<Dr. Briggs> Absolutely. Clearly estrogen deficiency can cause dysuria, and frequency. So it is likely that changes in hormone levels can exacerbate the condition. The most obvious exacerbation occurs around menopause. For some women estrogen replacement is very helpful.
<icnmgrjill> THE NEXT QUESTION IS FROM TERRI. SHE WANTS TO KNOW WHAT THE STATUS OF RESEARCH ON WOMEN'S CONDITIONS IS? IS THE ENVIRONMENT GETTING MORE RECEPTIVE TO RESEARCH WOMENS DISEASES??
<Dr. Briggs> Shorter answer is yes, it is getting better. Long answer: it is still not as good as it should be. We have some catching up to do.
<icnmgrjill> THE NEXT QUESTION IS FOR CRICKET, A MUCH BELOVED MEMBER OF THE ICN WHO HAS EOSINOPHILIC CYSTITIS. WHAT CAN WE DO TO HELP GENERATE FUNDS FOR MORE EC RESEARCH! CRICKET NEEDS IT AND WE WANT TO SUPPORT HER!
<Dr. Briggs> This is a tough one. I am aware that in some patients - the pathology of the bladder shows eosinophils. The cause of this is unknown, but the belief of most physicians is that this indicates what we call an autoimmune disorder. Auto-immune diseases are more common in women. They include lupus, rheumatoid arthritis and Sjogrens. This is a very active area of research. This is an important general principle - that insights from one disease may come from related research on similar other conditions. I suspect the answers for women with eosinophilic disorders will come from advances in study immune system disease. The best thing all of you can do is to continue to indicate your support for the NIH -and its research activities
<icnmgrjill> GREAT! WE HAVE TOTAL COMPASSION FOR OUR EC BROTHERS AND SISTERS.. ALONG WITH THE OTHER CYSTITIS CONDITIONS. NEXT QUESTION. ARE THERE ANY NEW BREAKTHROUGHS ON THE ROLE OF ALLERGIES, MAST CELLS AND IC/IBS? THIS IS SO OFTEN DISCUSSED.. BECAUSE SO MANY OF US HAVE ALLERGIES AND IBS AND RESPOND, AT TIMES, TO RELATED MEDS.
<Dr. Briggs> I think this is an area we can count on some breakthrough. Our IC clinical trial group is evaluating a number of possible drug regimens for studies of this sort - to test drugs that interfere with allergic responses.
<icnmgrjill> DO YOU BELIEVE THAT IC INVOLVES ELEMENTS WITHIN THE WHOLE BODY. MOST IC PATIENTS BELIEVE THAT IC IS A WHOLE BODY DISEASE OR HAS AN IMPACT IN VARIOUS OTHER PARTS OF THE BODY...
<Dr. Briggs> I absolutely believe if involves more than the bladder. The research to test new therapies - focuses on bladder symptom and pelvic pain - for some very good reasons. But effective therapies will have to treat the whole patient.
<icnmgrjill> FOLKS..WE JUST HAVE TWO MORE QUESTIONS. BEV WOULD LIKE TO KNOW IF ANY FOCUS IS BEING TAKEN IN RESEARCH TO DEVELOP TO WAYS TO DELIVER DRUGS DIRECTLY TO THE BLADDER...SAY.. PUTTING TAGAMET OR L ARGININE DIRECTLY INTRAVESICALLY. ANY COMMENTS?
<Dr. Briggs> The answer is yes. This is being discussed and tested in some studies by intermittent straight cath. It is quite reasonable to apply drugs directly to the bladder and that is a way to avoid side effects. We just need to wait the outcome of the research. I'd like to make the point that there are therapies that look promising at first often do NOT fulfill that promise when they are examined more carefully. So, that is why it's so important that we complete our research studies or that new therapies be really tested in a careful way. Because IC is a disease that waxes and wanes in some patients, sometimes a drug appears to help but when it's tested more carefully, it turns out that it was just by chance.
<icnmgrjill> IS THERE ANY WAY THAT WE CAN HELP YOUR DEPARTMENT.. IN PARTICULAR AS YOU PURSUE YOUR RESEARCH
<Dr. Briggs> Yes, there are two ways. #1.. we talked about indicating support for NIH research studies #2 the second way is that if you live in a place where there is one of our clinical trial centers, you can participate as patients in our studies. Those studies will have the newest and latest therapies.
<icnmgrjill> THANK YOU SO MUCH! WE APPRECIATE THE GIFT OF YOUR TIME TONIGHT, ESPECIALLY SINCE IT IS SO LATE FOR YOU!
<icnmgrjill> fOLKS.. LET'S SHOW DR. BRIGGS OUR APPRECIATION!
<icnmgrjill> :::AS SHE STANDS AND APPLAUDS:::
<Carol_L> Thank you, Dr. Briggs, for a most informative session here!!
<Tori> Thank you!!!
<SueC> THANK YOU, DR. BRIGGS
<icnmgrjill> YES.. SHE'S A NEPHROLOGIST
<alexa> thank you Dr. Briggs
<Bev> Thank you so much, Dr, Briggs!
* Cricket__ Cheers Loudly With Enthusiasm!
<ICNJulie> THANK YOU DR. BRIGGS.
<Cricket__> Thank you Dr. Briggs!!!!!!!!!!!!!!
<phoebe> Are RFA's reviewed by urologists or other physicians
<Cyster> Thank You
<Kim> clap!clap!clap! Thank-you
<sasha> thank you dr
<Jo> Thank you
<SueC> Thank You!!!!
<rinne> thank you
<peggy> Dr Briggs many thanks
<summer> very good thank you
<ColleenD> Thank you so much
<Rae> Thank you Dr. Briggs , I'm sorry I got here too late to have read your other responses
<icndiane> THANK YOU FOR JOINING US
<Dr. Briggs> The committee that reviews that RFA's consists of about 3/4's urologists and 1/4 other specialties!
<Dr. Briggs> I've got to leave now.... Thank you everyone!
Special gratitude to Julie Halbur for coordinating this exceptional presentation.
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