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10-27-2009, 10:58 AM #1ICN Member
- Join Date
- Oct 2009
- Posts
- 3
Has anyone felt worse after taking Elmiron??
I have tried Elmiron in the 1990s and again this summer and have found that I feel worse after taking it. Does anyone else connect to that problem??
I have intense bladder pain(excruciating bladder cramps & extremely sore all the time), vaginal burning, urethral pain and difficulty urinating. I do not have the frequency problems. The doctor is getting frustrated at protocols that either don't work or make me worse, and in the meantime I keep getting worse. Screaming in pain too often now.
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10-28-2009, 12:37 PM #2ICN Member
- Join Date
- Aug 2009
- Location
- Orange County, CA
- Posts
- 419
I am currently on Elmiron and have not had any problems (knock on wood). I know there are a few people who felt that Elmiron made their symptoms worse though. Sorry I couldn't be more help!
Diagnosed Sept. 2009 based on symptoms
Current Medications:
Elmiron 100 mg 3x per day (started Sept. 09)
Glucosamine w/MSM 1000 mg per day (started Oct. 2009) Added Glucosamine w/MSM and Chondroiton in Jan. 2010
Elavil 12 mg at bedtime (started Dec. 2009) Upped my dose to 25mg on Dec.14th) Lowered dose to 12 mg again on Dec. 28 due to the feeling that I was having slight retention
IC Diet
Ativan as needed .5 mg (this really seems to help with my symptoms)
Update as of Jan. 6th 2010
Stopping Elmiron and weaning off of Elavil
Started using 10 mg vaginal valium
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10-29-2009, 07:50 AM #3ICN Member
- Join Date
- Oct 2005
- Location
- Central, NY
- Posts
- 2,809
I had some nausea with it and with the advice of my doc, he told me to take the med out of the capsule and the side effects went away. If it's making your IC worse then a call to the Doc may be what you need. Some meds just don't work for everyone and our bodies are all different. Don't be afraid to speak out and tell the Doc what it's doing to you.
Kara
Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
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10-29-2009, 03:20 PM #4Support Leader
- Join Date
- Dec 2003
- Location
- California
- Posts
- 8,261
Elmiron made my irritated bladder much worse. It started as a tickling sensation a few days after I started taking it & within 6 weeks, I was voiding twice as often & developed urgency. My doctors just said my IC was probably progressing & to keep taking it. Finally, I insisted it was likely the Elmiron & stopped it. 10 days later I was back to my previous level of IC. What a disappointment.
Kadi
-------------------------------------------------------------
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.
------------------------------------------------------
This week's favorite one-liner:
"Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
"
New second favorite:
Please, Lord, let me prove that winning the lottery won't spoil me.
- Unknown
Adding a third because I'm just so darn easily amused...
"Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
- Bruce Graham"
Current treatments:
-IC diet
-Elavil 30mg at night
-Ditropan 5mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills every morning and night
-Pyridium if needed, usually once a week or so
-1 Vicodin at bedtime,
-Flexeril 10mg at bedtime
-Dye Free Benadryl for allergies occasionally
-Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
-Managing stress
-Fur therapy: Hugging the cat!
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07-04-2010, 10:42 AM #5ICN Member
- Join Date
- Feb 2006
- Location
- Muncie, IN
- Posts
- 166
I took Elmiron for 2 years and the only thing it gave me was year round constant diarrhea. I found no relief from it. You might as well have stuck cotton in my ear.
Susan
[SIZE="1"]I pee (a teaspoon and drops) on average 60 times per day (still). Pelvic Floor Dysfunction (urinary retention due to a botched urological surgery) and chronic pelvic pain 32 years.
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