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06-30-2007, 01:37 PM
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#1
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ICN Member
Join Date: Apr 2007
Posts: 23
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I THOUGHT Elavil was working...
I've been taking Elavil for two weeks + 3 days now, and I THOUGHT I was getting better, when all of sudden - BAM! My IC took a turn for the worse again  This is making me VERY angry and frustrated!!!!!!!!!!! I am ready to gut myself and rip my bladder and urethra out with my own bare hands!  This flare has been going on for FOUR months. I cannot get it under control for the life of me. (On top of the Elavil, I am taking Elmiron, Cystoprotek, Ditropan XL, and Free Dried Aloe Vera........) I really had high hopes for the Elavil....I was all smiles a week ago when I thought it was really working....I almost had my life back. Then, on Thursday, it all came rushing back again..The intense frequency, urgency - Today being the worst....Do you think there is still hope that the Elavil will work for me?? 
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06-30-2007, 01:44 PM
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#2
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Support Volunteer
Join Date: Dec 2003
Location: California
Posts: 6,314
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Are you on the IC diet? http://www.ic-network.com/handbook/diet.html
Is there a possibility that something you ate or did (exercise, sex, long car trip) or the time of the month (many women have menstrual related flares) could have set off a flare?
How much Elavil are you taking?
__________________
Kadi
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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:
"I love deadlines. I especially like the whooshing sound they make as they go flying by...
New second favorite:
"And which dwarf are you?."
Adding a third because I'm just so darn easily amused...
"Eagles may soar, but weasels aren't sucked into jet engines."
Current treatments:
-IC diet
-Elavil 20mg at night
-Ditropan 5mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills every night & sometimes in the morning also
-Pyridium if needed, usually once a week or so
-1 Darvocet 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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06-30-2007, 02:11 PM
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#3
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ICN Member
Join Date: Feb 2004
Location: Baltimore, Maryland
Posts: 293
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Sorry About the Flare
I, too, have just started with 10 mg of Elavil.
I wanted to let you know that despite what the people at the company said, freeze-dried aloe vera really burned in my bladder. I had to stop it.
I hope you feel better soon and get to the source of your latest flare.
__________________
Diagnoses: Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since who knows when), IBS (since who knows when), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)
Medicines:
Hydroxyzine HCL 25 mg/night helps the IC
Synthroid (replacement for having thyroid removed 35 years ago for cancer)
Nexium 40 mg in PM for GERD
Ranitidine 150 mg PRN, one at night
Xifaxan 2 200 mg/ 4 times/day for 7 days for small intestinal bacterial overgrowth (contributor to irritable bowel) repeated every 3 months as needed
spirononlactone 25 mg/day for post-menopausal hair loss
Non-Medicinal Helps:
glucosamine 500mg/MSM 500mg 3 X/day
2 Fibercons two times a day,
2 Lactobacillus acidophilus/ day AM/PM,
3 1500 mg dessicated liver pills a day
1 500 mg flax seed oil pill a day
1 50 mg allithiamine (vit B-1) per day for Postural Orthostatic Tachycardia
1 500 mg ester-C per day
2 600 mg biotin a day for hair growth
1 650 mg TheraCran (cranberry) per day
2 Target brand calcium chews (like Viactiv) per day for osteopenia
cooked egg whites 1 time/day for protein (amino acids for healing)
I can do all things through Christ which strengtheneth me. (Phillipians 4:13)
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06-30-2007, 02:40 PM
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#4
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Support Volunteer
Join Date: Dec 2003
Location: California
Posts: 6,314
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When did you start the Cystoprotek? It gave me a horrid flare & migraine.
Also, did you start the Elmiron at the same time? It actually made my IC worse--the longer I took it I had increasingly more frequency, urgency. When I stopped it, I got better over several weeks til I was back to the same level I was at before taking it.
Did you start all the meds at once? Can you track your flare back to starting a supplement or medicine?
I'm a big fan of writing on a calendar new foods & medicines so that if I start having problems I can tell if it's related to something I've eaten or taken.
Hope you feel better soon-
__________________
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:
"I love deadlines. I especially like the whooshing sound they make as they go flying by...
New second favorite:
"And which dwarf are you?."
Adding a third because I'm just so darn easily amused...
"Eagles may soar, but weasels aren't sucked into jet engines."
Current treatments:
-IC diet
-Elavil 20mg at night
-Ditropan 5mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills every night & sometimes in the morning also
-Pyridium if needed, usually once a week or so
-1 Darvocet 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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06-30-2007, 05:59 PM
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#5
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Support Leader
Join Date: Nov 2006
Location: Louisiana
Posts: 8,814
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Elavil can sometimes take longer to work it really does help, dont give up on it yet.. 
__________________
Hugs
Ronda 
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN 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.
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07-01-2007, 04:40 AM
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#6
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ICN Member
Join Date: Dec 2006
Location: Dartmouth, NS
Posts: 219
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you may need to talk to your doctor about increasing your dosage of the elavil - i originally began on 10mg, then in a week went up to 20mg, then in another week went up to 30mg and stayed there - but a few weeks later i was in unbelievable pain, had this ITCH when i urinated (it is actually my body's response to pain) and couldn't sleep...I went back on Ditropan XL for a few weeks to help the pain and then restarted on Elavil again but at 30mg for 7 days, then 40mg for 7 days then 50mg and have stayed there and so far so good...
also taking tylenol arthritis for the pain - it's extended release tablets that work up to 8 hours and they are a higher dose (650mg/tablet- take 2 tablets 3x/day)...these work very well for me...
good luck, i know it's hard but the elavil does take some time to build up in your system and once you get the correct dose for yourself, you will feel a huge difference...
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