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Has it helped
I would love some encouraging news.... Anyone out there helped by Elmiron? My dr. believes that it can send people into remission.
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I started Elmiron 11 weeks ago tomorrow. I take 3x daily 100mg each on an empty stomach. I have had no side affects and have started to feel really good! I hope it will continue and hope and pray it works for you..
~~Pamj~~God brought me to it, He will bring me through it!!!
Diagnosed 2003
by cysto/hydro
Elmiron took almost a year- made me sick, caused diarrhea
Pyridium -Made me sick
Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
Tried DMSO instill- had 5 out of 6
Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
Cysto/hydro April 6th 2011-- on expansion only hold one cup
IBS/ IC
High blood pressure meds and Crestor
Metformin (prediabetic)
Sinequan (depression) -
Thanks for responding. I'm only on week 4. Glad to hear that you feel good. How early in the treatment did you get results?Comment
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I have been on Elmiron since July. I take 3 x 100mg a day. I am feeling really good. I definately notice a big difference. But I also take Atarax, Detrol LA, and Elavil. So I think it is the combo that helped me.
Cali
Cali
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Dawn,
I started to feel better around week 5.. My uro was surprized that I was feeling good so quick.. I do not take anything else with it. Stress in my life had let up as well at that time so maybe that is part of it. I do take a lot of water with it and always on a empty stomach..
~~Pamj~~God brought me to it, He will bring me through it!!!
Diagnosed 2003
by cysto/hydro
Elmiron took almost a year- made me sick, caused diarrhea
Pyridium -Made me sick
Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
Tried DMSO instill- had 5 out of 6
Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
Cysto/hydro April 6th 2011-- on expansion only hold one cup
IBS/ IC
High blood pressure meds and Crestor
Metformin (prediabetic)
Sinequan (depression)Comment
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i started taking elimron grouphug june 2001 i couldnt tell it was helping me until i stopped taking it then i knew it was my doctor also look at my bladder after being on elimron and said it looked alot better but still i didn't feel it was helping me enough so now i take the heparin at home one to three times a day threw a cath I can tell that has helped.
i have heard many people going into remission with elimron good luck i pray it works for you.Medicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
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I've been on Elmiron since '98. My pain is much less, I think because I now have a bladder lining to protect me!IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.Comment
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Thanks! Was anyone helped with urethral pain? That's my main problem.Comment
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Hi Dawn.
Most of my pain is/was uretheral. I have been on Elmiron for 2 years now and it has helped me a great deal. I take nothing else but I must stick to a strict diet. If I slip up and eat a NoNo I will feel it. My flares however are not as severe since being on Elmiron. I also make sure to take it religiously and on an empty stomach. I don't ever want to mess up and have the BE (before Elmiron) pains again.
Good luck. I truly hope the Elmiron helps you too.
Life is fragile. Handle with Prayer.Comment
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5/02 Pain started. Put through 5 antibotics.
8/03 Uro did cystoscopy, diagnosis IC.
10/03 Started Elmiron & elavil. Strict with diet.
11/03 Started DMSO treatments.
12/03 Pain lifting till 5th week of DMSO. Got infection. Took antibiotic for 1 week. Completed last DMSO after infection cleared. By mid Dec. pain free!
1/04 No pain, unless I sit to long, or don't relieve myself right away. Ya, no pain!
No side effects at all from Elmiron, another ya!
Most important of all, I ask God for a healing. If it be through medication, okay, I'll take it.
Hope this helps someone.Comment
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I've been on Elmiron for almost 2 months and it has helped me tremendously! I get little flares when Ieat something bad but not not as bad as it used to be. Now the only time I flare bad is during my period.
It sounds like its starting to help you too! YAY!!
Erin
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I've been on Elmiron since 1 month and can tell it is already helping...a lot. I also stick to my diet and I'm feeling better everyday! winkTilly
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Thank you to everyone responding. hi
Tomorrow will make 2 weeks on it & I've been afraid to hope too much... (but I'm secretly really hoping anyway!!!)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.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!Comment
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I am getting ready to start my third month of Elimron. I feel so much better, than I did without it. I have a lot more energy. It is a beautiful thing!! Stick to it.Comment
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Dawn,
I have been on Elmiron since June 13.My first uro had me on 100 twice a day. My second uro (who is on the IC Assoc. board and does research) upped the dosage to 200mg. twice a day for a total of 400. After a week of double the med, I woke up and realized that my pain was gone. It happened just like my first uro said-you just realize one day that you aren't burning. My new uro told me I could also up my Elavil to 75 from 25mg. a day, but I can't do that and teach school. He also took me off Atarax as I showed no mast cells. The researcher told me Elmiron does not have be taken on an empty stomach. He told me to take my pills, take a shower, then eat breakfast. Good luck, RinnieComment
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