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  1. #1
    ICN Member massagedoula's Avatar
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    How long does it take for symptoms to come back after stopping Elmiron?

    So I have been taking Elmiron for 5 months and doing GREAT on it. 6 days ago my whole body started itching like crazy. Then the skin turned red like sunburn. My PCP says that it looks like a allergic drug reaction. So said that she HIGHLY DOUBTED it was from Elmiron, since I have been taking it for 5 months and doing great. I called up to the University of WA to try to speak to my uro. Of course, like Uros do, I never got ahold of her, but her nurse did call me back and say that she doubted it was the Elmiron. Nevertheless, I decided to stop the Elmiron for the time being, 'just in case.'

    So if it was not the Elmiron causing the itching and redness of the skin, the only other thing that I was doing that was new during that time was using topical silver sulfadene cream on my left hand for a 2nd degree chemical burn. (A disinfectant called "Lysol IC Phenolic Disinfectant Cleaner splashed on my hand during work at the midwifery clinic. And yes, I do see that the letters I and C are trying to ruin my life...LOL.)

    So the PCP doubted that it was the sulfadene cream because it was topical. She doubted that it was the Elmiron too, because I had been taking it for 5 months already with no problems. I was not taking ANY suppliments at that time, either. I had been doing really well with just Elmiron and did not want to rock the boat. I ate nothing new, and didn't wear any new clothes or use any new soaps or detergents. We are mysified. I went to my naturopathic doctor today too, and she also said that it looked like a severe histamine release, and that it looked like a drug or food allergy. She also doubted it was the Elmiron, and she advised me to go back on the drug ASAP, before I started getting IC symptoms again. But I am worried to go back on it before this allergic reaction is gone.

    The reason that I am posting this story is that I am wondering, for those that Elmiron worked wonders for (like me) and they had to stop it for a time (maybe b/c of a surgery or something), how long until their IC started raging back? I have been off of it for 3 days now. I am a little more irritated in my bladder than my baseline, but not so much that I can't function or have a "normal life." I am terribly worried that if I stay off it for much longer all my old IC pain and frequency will come raging back and it will take me another 5 months to get it away again. But I don't want to get back on it until I can figure out what is causing my skin reaction, and get it to stop.

    Please give some advice...
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  2. #2
    ICN Member Mel53H's Avatar
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    I went off the Elavil and the Elmiron for about 2 months and I have been having the worse flare for over a week now. I am back on it now. Thank Goodness!

    I would to go back on the Elmiron, because you would have had a allergic reaction by now, not 5 months later. My flare that I am having now has been hard to get rid of because of going off the meds. I hope that you don't make the same mistake.

    Melanie

  3. #3
    ICN Member ICLori's Avatar
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    I"m sorry you are having this bad allergic reaction to something. It could be anything in your diet - you might have to do some kind of elimination diet to figure this out.

    One thing to remember is that people usually aren't allergic to something the first or even second time they are exposed to it. It's actually more common for allergies to develop after repeated exposure - so just because you've taken Elmiron (or eaten peanutbutter) a million times, doesn't mean you can't suddenly develop a severe allergy to the substance.

    That being said, I've never heard of an allergy to Elmiron before, but that doesn't mean it's impossible completely. I have heard of people being allergic to their own sweat of all things.

    I hope you get better soon and I hope it's just some culprit that's easy to eliminate like a type of laundry soap or a lotion or some food that you aren't especially fond of anyways.

    Blessings, Lori

  4. #4
    Forum Manager ICNDonna's Avatar
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    When I developed a headache from elmiron I had been on it for just under six months so I know it's possible to develop a reaction from it that long after being on it. But, the great thing was that after I had been away from it for less than 48 hours, the headache was gone. I then went back on it and the headache returned almost as promptly so I had my answer.

    Are you wearing scrubs at the clinic? Any possibility there was a change there? You might want to check with them to be certain. It could be you could make some special arrangements about scrubs if you need to.

    Donna
    Have you checked the ICN Shop?
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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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  5. #5
    ICN Member sweetangel2080's Avatar
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    oh dear, I hope you work out what it is so you can go back on the Elmiron

  6. #6
    Registered User tango58's Avatar
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    I also stopped taking Elmiron this summer for about 2 months because I didn't think it was working, after about 6 weeks I was in the most horrible flare that I knew it was doing something for me. After I went back on it, it took about 3 weeks until the pain subsided somewhat for me. I guess it does help me more than not taking it. I just took a multivitamin today, the first one I have taken in almost 1 1/2 years and I am in a huge flare right now. I don't think I will take another one again. I had read that some people do react badly to them but thought that I would try it to see if I could handle it. I guess they are not for me

  7. #7
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    If it is the elmiron that you're reacting to you can always get heparin instills which do what elmiron does only better.

    Marsi4

  8. #8
    ICN Member poetgirl's Avatar
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    I have had experiences where there was something different in the air that caused my skin to turn red and itchy. Often, it was inside buildings where the ventilation probably was not so good and who knows what was circulating around. Did it happen while you were at the clinic?

    Also, have you had problems with yeast before? My best friend experienced skin symptoms like that for months until she found out she had a yeast imbalance.

    Just some things to consider before you sign off on Elmiron! Still, it is always good to do the detective work if you are having a histamine reaction.
    Namaste

    "You must be the change you want to see in the world." - Mahatma Gandhi

    "The most important medicine is tender love and care" - Mother Teresa

    Proud mother of Ahleia, born on April 9, 2007

    -----------------------
    Diagnosed with:
    IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

    Meds:
    Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

    Health treatments/practices:
    Kripalu yoga, Chiropractic, Massage therapy and Reiki

  9. #9
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    When I got pregnant, I went off my meds-Elmiron and Elavil. I was fine for about 3 weeks...then WOW...HUGE FLARE. Though I know the hormones were raging too, I really feel like that is when the Elmiron "wore off".

    My uro describes going off of Elmiron like turning a big tanker ship around. It will be awhile before you can see how you do without it. And unfortunately, if you get a huge flare, it takes a couple weeks to settle it down again.

    That is why, even though I don't really feel like the Elmiron is helping after 8 months on it, I am going to still give it some more time.

    I sure hope you can figure out what is causing your reaction!
    IC dx June 2003

    Pregnant with IC 2004-05....off all meds

    Elmiron 200 mg bid
    Elavil 25 mg nightly
    Ovcon 35 BCP
    IC Diet

    Tried but dc'ed: Neurontin, Lyrica, Claritin, Cystoprotek


    Dreaming of a grande non-fat mocha with extra shot!

  10. #10
    ICN Member
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    Massagedoula, I could not find if you ever discovered what caused your allergic reaction ? I have been thinking of going on Elmiron and was following your story. Could you tell me if you are back on the Elmiron? Thanks, Fran

  11. #11
    ICN Member massagedoula's Avatar
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    Sorry all,
    I am at school and have been really busy with midwifery. I have nto had any time to respond to PMs or go on the boards.

    The allergic reaction was NOT from Elmiron.
    It was from sulfadene cream that I was applying to a burn on my hand.

    I am back on Elmiron and doing fine with no side effects or reactions. I just wanted to clarify that....
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  12. #12
    ICN Member
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    i actually felt some difference after going off elmiron for just a day, but then again it could have been a coincidence.

  13. #13
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    hello massagedouge. Did Acuputure Work for IC ?

  14. #14
    ICN Member
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    I just missed my afternoon and evening doses one day and woke up the next day hurting!!

  15. #15
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    hello mags. You missed what and the next day you were hurting.

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