Just stumbled onto this site...

[elliott]

I have been diagnosed with IC for about two years. Flare-ups in the past only came evey couple of months, but I must be progressing b/c they are coming more frequently. I noticed something that I thought was strange about a month ago. On Sunday afternoons I would take a nap on my back with legs crossed for less than a hour and wake up in pain. Now I notice thay anytime I take a nap without being on my side with a pillow b/w my legs - here comes a flare up! Also if I sit up straight in a chair too long or cross my legs for too long I get a flare up. I haven't noticed a diet problem. I have a subscription for Elmiron but I have not been taking it constantly b/c my flare ups were so infrequent. Maybe I should start taking it all the time??? I don't typically get up in night to urinate. I usually have to go several times in the morning with things getting better as the day wears on. My IC is characterized mostly by pain - a burning feeling with the sensation that my bladder will not relax. I also have lower back pain and hip pain that feel like I felt when I was pregnant and the baby was growing beyond my body's ability to stretch! Does any of this sound familiar to anyone? Any insight?

Thanks so much for listening (reading...)

[Shalai]

Hey there!
I think Elmiron is supposed to be taken on a daily basis. I was wondering while I was reading your post if you have any back trouble, because you mentioned having to sleep a specific way. I have lower back trouble, and if it gets out of whack, the IC usually flares up. Sometimes it acts up anyway, without ANY apparent reason or provocation.:confused:

Hope this helps some, and welcome to the boards!

Sherry

[Sarojini]

Generally, to be most effective, Elmiron should be taken as a daily medication, whether or not you are having symptoms. Since it takes so long to work in the first place (3 months to one year to be fully effective), going on and off is like starting again from square one biologically. You may want to discuss this, as well as your frequent flares, with your doc the next time you go.

[vm]

Yeah, taking Elmiron only some of the time probably won't help your symptoms at all. It takes time to work - kind of has to build up in your system. I'd definitely try taking it all the time for several months. It may just take care of those flares for you. :)

[Katrina]

:welcome: to the ICN! I most definatly agree with the others about Elmiron!!!!!!!!!!
I think that burning may be some Pelvic Floor Dysfunction...something you may want to talk to your doctor about it is very common with IC patients!

I think I should also mention that you may want to avoid the biggest triggers with the diet....it may help your bladder heal and with that and elmiron you may not have any more problems. :grouphug:

Also....very few patients with IC progress. Normally once treatment is started people improve. IC is not considered a progressive disease. Although some things can make it worse ie infections or abdominal surgery or injury.

I hope you can get those flare completely under control soon!
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

[lindavk]

Oh, Thanks, Katrina --- I was under the impression that IC was progressive - I am so happy to hear that it is not!!!!

[ICNDonna]

Katrina is right. Only a very tiny percentage of IC patients progress. I absolutely agree that Elmiron must be taken full time to have any effect at all. I also suggest that you follow an IC diet faithfully for at least 6 to 8 weeks before deciding that food and drinks don't effect you. You'll find the diet, as well as a wealth of other information, in the Patient Handbook (see link at the top of this page).

Donna

[vivig14]

if you haven't yet tried physical therapy, it's well worth a shot. I was also diagnosed with IC back in '97 via cystoscopy and hydro, told I do not meet the criteria for it now by Dr. Moldwin. Currently, I have mostly pelvic floor pain, lower back, hip and sacroiliac pain, and intermittent difficulty with urinary retention (or "dropping the pelvic floor," which is in a chronically contracted state). The types of pain you have described sound like they could be addressed by PT. The restrictions you are feeling could be the result of external or internal trigger points. See a physical therapist who is familiar with this terminology...not that easy to find, but could offer some serious relief! Good luck.

[elliott]

Thanks for all of your input - I am now taking elmiron everyday and the flare up has finally passed! I have an appt. with my urologist in a couple of weeks where I plan to discuss flare prevention and management as well a PFD and physical therapy. Anything else I should talk to him about?