AUA coming next week. Any questions for docs??

[icnmgrjill]

Folks,

I'll be at the AUA (American Urological Association) conference this weekend and through next week. If you have any burning questions that you'd like me to ask or research, just post them here. Many of the biggest IC doctors researchers will be there.. and I'm happy to bring along general questions if I can.

Jill O.

[liznazz]

I'd like to ask a question. How long is a patient supposed to stay on Elmiron (oral) therapy? I know it takes 6-9months to "kick in", but how long are you supposed to stay on it if you're not feeling better by that time? A Year? 2 years? Is there a time limitation before a doctor can diagnose whether it is working or not? But what if a patient doesn't feel a difference within 9 months? Is it stopped or do you continue? Thanks.

[classics]

Please ask about the new IC Prelude test. Are urologists recommending this test before the cystoscopy and hydro and when will most urologists be aware of the test. (mine never heard of it).

[liznazz]

I think I should clarify my original question. If you do not feel improvement within 6-9 months on Elmiron, do physicians generally have you continue for a prolonged period of time or do they discontinue the Elmiron at this point? What is the rule of thumb here---give it more time or discontinue? Thanks again.

[liznazz]

sorry, one more question about Elmiron. Is the hair loss rate accurate (3-4%)? It seems that from the posts I am reading, a lot of women are experiencing hair loss. Even on these posts it seems more than 3-4%.

[yvette]

The new slant on stem cells -- you can now harvest stemcells from yourself. Could you ask about the how realistic it might be to harvest one's own stell cells (rather than another fetus) and use that to treat a bladder being damaged by IC. Treat I mean, regenerate the baldder to new condition.

And would this be viable more for the younger IC crowd or gathering stems cells from a realtive with a close match? -- in the same way they test family members for organ/bone marrow donor matches. And could any age person gather their own stems cells? is this something the IC Medical Community is even looking into?

Lab grown bladders? Are we any closer to getting FDA approval for human trials? Boston Pediatric Urologist, Dr. Anthony Atala's beagles lab-grown bladder were a success in all 6 instances in 2001.

Thanx!!!:hi:

[kadi]

If a patient has had only partial success with oral treaments, what next?

If it is DMSO cocktail, then what are the benefits from it? Can it stop the sensation of having to pee all the time (even when you don't have to) or is it just for pain? Does it do anything to help with urethral burning? How can catheter use for DMSO cocktail be less provocative of urethral symptoms?

Gee, can you tell what my next treatment option appears to be?

Thanks Jill!

[sleepyangel30]

Ask them if there is going to be new treatments in the future. :angel:

[micky]

I would like to know if researchers are looking at what happens when pregnant women with IC go into remission. I know not all do but there must be something to their remission.

[darlene]

Are researchers looking into autoimmunity as a cause of IC?

[dyno]

How many Dr.s try alternative treatments such as Glucosamine/Chondrotin or others in their patients?
What kind of results do they get?