Latest Blog Article: IC Awareness Daily Fact #17 - Millions of Men Struggle With IC Too
Results 1 to 11 of 11
  1. #1
    Registered User
    Join Date
    Feb 2004
    Location
    Fountain Valley, California
    Posts
    57

    Post Elmiron and Flares?

    Has anyone flared when starting Elmiron? If so did you stay with it? I started it yesterday early in the day, then had a night flare. But I also ate green beans, and that's the 3rd time I've flared after those...but within 30-60 minutes. It seems then, that the green beans are the problem, although that's pretty fast to start flaring...? Confused and afraid to take more...

  2. #2
    Junior Member blueskies's Avatar
    Join Date
    Feb 2004
    Location
    Virginia
    Posts
    14

    Post

    I started Elmiron on Feb. 14th the day after I had a hydro. I am flaring bad, but I'm not sure if it is from the hydro or the Elmiron. It seems like my symptoms are worse right after I take Elmiron on an empty stomach. I'm hoping things improve but like you I wonder if it is the Elmiron. This probably doesn't help you but I can understand your pain. I hope you are feeling better soon.


  3. #3
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,483

    Post

    I took Elmiron from Dec. 23 til one week ago. I realized when I talked with my uro that things had been getting gradually worse & worse. Constant sensation of having to pee and having more & more food sensitivities.

    I was scared it was the hydro/cysto wearing off (I had that in Oct); my uro said the only way to find out was to stop the Elmiron, that I could always restart it if needed.

    I stopped it a week ago & am feeling better, not great, but better. Go figure.

    I am not sure about the role of sulfa allergy (I'm allergic to sulfa) & the "sulfate" in Elmiron??

    Good luck - Elmiron does have a hotline that will connect you with a nurse to answer questions...
    I don't remember the number offhand, but I saw it on these message boards?!!
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -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!

  4. #4
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,483

    Post

    Oh, about your flare question....

    I've flared 20-30 minutes after eating/drinking something -for me that's usually how long it takes- the good news about that is it makes the culprit pretty obvious!
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -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!

  5. #5
    Registered User
    Join Date
    Feb 2004
    Location
    Fountain Valley, California
    Posts
    57

    Post

    Very interesting about the allergy. I think that salt might be a bad item for me, and it has sodium in it. I'm going to ask tomorrow if there is a sodium free compound. Can't hurt to ask.

  6. #6
    ICN Member vm's Avatar
    Join Date
    May 2001
    Location
    Eastern USA
    Posts
    5,506

    Post

    Just wanted to mention that I am allergic to sulfa and have done fine on Elmiron. Kadi and I have talked and she did learn that there is a small subset of people allergic to sulfa who have trouble with Elmiron --- but I did want to post that I know many people who have sulfa allergies who do fine on Elmiron. I only say this in case someone out there is considering it and would be afraid to try it b/c they have a sulfa allergy --- most of us do fine with it.
    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

  7. #7
    Guest YankeeCandle224's Avatar
    Join Date
    Dec 2003
    Location
    NC
    Posts
    236

    Post

    I believe the # is 1-888-Elmiron. Hope this helps. I too was rx'd it, took forever to get it because it cost so much, even with insurance the copay was 65.00, and I took it for about a week, with terrible stomach aches, gas, and nausea, but when I stopped it those symptoms got better and are occasional again, meaning like 1-2 times a week for me instead of 24/7.

    I do plan on starting it again because my IC symptoms are moderate and I need something to hang on to that will help me and I didnt give the Elmiron a good enough try.

    Hope that is the right number. If its not 1-888, it might be 1-866 or 1-800, I cant remember....too early in the morning.

    Sandy

  8. #8
    IC Friend Sharon's Avatar
    Join Date
    Mar 2000
    Posts
    362

    Smile

    Kim, You must be a mind reader, I am also allergic to sulfa, and have great concerns about taking Elmiron. Thanks for your post, it helped calm at least one of my fears regarding this medicine.

    Sharon
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
    Mary Anne Radmacher

  9. #9
    ICN Member vm's Avatar
    Join Date
    May 2001
    Location
    Eastern USA
    Posts
    5,506

    Post

    Well, good, Sharon. I know how I was/am when starting a new med and I can see a side effect that happens in a minority of patients and get scared to death about it. lmao The sulfa thing has been brought up before and I had found some great info once upon a time about sulfates being completely different than sulfa. I'll have to see if I can find it again.

    There have been lots of posters here who are allergic to sulfa and do fine.
    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

  10. #10
    Registered User
    Join Date
    Feb 2004
    Location
    Fountain Valley, California
    Posts
    57

    Post

    Thanks for all your comments. I think my problem was actually that I got my first period in 5 months (I thought I was done with those) and the hormone surge set of the worst flares yet. My doctor agrees, she's convinced there's no problem with the Elmiron. I started again early today, and no flare, took more this afternoon. I'm feeling a flare coming, but this is my pattern...good day, bad day, good day, bad day...yuck.

  11. #11
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,483

    Post

    Thanks Kim for clarifying the sulfa allergy thing
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -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!

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. More info on elmiron & cystistat instillations!
    By icnmgrjill in forum DMSO, Cystistat, Heparin - Interstitial cystitis bladder instillations
    Replies: 11
    Last Post: 06-06-2006, 04:01 PM

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •