Thread: Just stumbled onto this site...
07-06-2006, 03:10 PM #1
- Join Date
- Jul 2006
Just stumbled onto this site...
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...)
07-06-2006, 04:20 PM #2
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.
Hope this helps some, and welcome to the boards!
SherryLike no one's watchin'!
"Go confidently in the direction of your dreams. Live the life you have imagined" -Henry David Thoreau
07-06-2006, 04:36 PM #3
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.****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
07-07-2006, 12:09 PM #4
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.Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
07-07-2006, 03:44 PM #5
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.
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 newbiesFaith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
or find me on facebook http://www.facebook.com/kat671?ref=profile
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firstname.lastname@example.org please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
07-08-2006, 06:51 AM #6
- Join Date
- Apr 2004
IC Not progressive!!!
Oh, Thanks, Katrina --- I was under the impression that IC was progressive - I am so happy to hear that it is not!!!!
07-09-2006, 03:17 AM #7
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).
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
07-09-2006, 03:24 PM #8
- Join Date
- Mar 2006
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.
07-15-2006, 07:36 AM #9
- Join Date
- Jul 2006
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?
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