What is cured?

[theoutlaw77]

I am still kinda new to all of this. I am just wondering what people mean when they say that they are in remission, or that they have their IC under control with the right meds. I am taking Elmiron (200 mg twice per day) Hydroxyzine (50 mg twice per day) Pyridium (when needed) and Percocet (about 3-4 times per day.) IF I take all of these things, I do feel ok- most of the time.

Is that what "cured" is going to mean for me? Is this the best that it is going to get? Am I going to have to take these pain pills every day for the rest of my life? Or, do most people find that after awhile it gets better, and they do not need the pain pills, or other meds? I know that the Elmiron is pretty long term. I am just wondering about the others. I want to have another baby one day, and really hope that I will not need all of these meds so that I can!

Any input is appreciated! This IC sucks!! It is so easy to get depressed about it!

[K9wife]

Hey Outlaw! I agree....this disease just plain stinks. I was up all night, and after 25 years (plus) of this you'd think i would have at least figured out a way to get more than a few minutes sleep at a time without constantly being bombarded by the urge that my bladder will burst at any moment. I had a few different times that i recall when my symptoms weren't quite as bad, and each time I would think, "I'm cured!" only to have a flare pop up at the worst possible time for me. I guess like most folks on here- we just have to enjoy the good days when we are lucky enough to get them. As for meds- we have discussed that whole issue by email, so I say- keep yourself comfortable and the rest of the world will all seem more tolerable!

[ICNDonna]

After thirty years with IC, I have accepted that there is currently no "cure" for IC. However, most people with IC do find treatment options that work and most feel good the majority of the time. Remissions are not unusual. The mistake some make is to feel they are cured when they feel good for months --- and they decide that they no longer need to follow an IC diet and take meds like elmiron --- and the symptoms do return.

And I know some people who have had remissions lasting several years.

Donna

[theoutlaw77]

I guess that I am just wondering- do most ICers have to use pain meds on a daily basis as part of their "treatment plan" to feel ok, and have a "normal" life? Or, do most people get to the point that they only have to use the pain meds when they have flares? Right now, I am in a constant flare (for months and months now), and I am wondering when it will go to just having a flare here and there.

[ICNDonna]

I only need and take pain medications during a flare. Most of the time I don't need them.

Donna

[emilyrose197377]

That is good Donna I am hoping that I get to that point that I don't need ic pain meds everyday. Right now I do.

Take Care
Kim

[VickiB]

I guess I'm pretty lucky. My IC flares are almost always diet related now. Most days, the only reason I'm aware of my IC is that I need to go twice as often as the other people I know. I always have a slight irritation, but nothing that requires pain meds. Maybe three times a year I'll have a flare for no reason I can pin down, which are usually blow-out, chew the paint off the walls, agonizing, week(s) long events. My doctor doesn't believe in giving pain meds so I'm left to suffer through them the best I can.

Still, after more than 14 months of meds (Elmiron-hydroxyzine-amitriptyline), if I dare indulge in forbidden food or drink I go right back to the pain & frequency I had before I ever began treatment. So while I'd say I have my symptoms under control, I'm painfully aware that I'm no where near being cured or in remission.

Vicki