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  1. #1
    ICN Member Crzycatlady's Avatar
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    Exclamation Get your blood tested while on Elmiron!!!

    Hi everybody!
    It is very important to get blood work done while you are on Elmiron.
    Have them check your liver function and blood cells at least every three months!
    I hope I am not repeating something that's already been said, but I thought I would share my experience with Elmiron, maybe it will help someone. Elmiron did help me for a bit, but it caused more damage then good. I was just so desperate for relief from my IC that I over looked all the nasty side effects it was causing me. Every doctor I went to didn't know much about Elmiron, so they didn't know to check my blood. My wonderful nurse practioner was checking my hormones, when she found the problems.
    I was on Elmiron for three years. During the time I was on Elmiron, I lost about 40 pounds due to constant nausea. I had constant runny diarhea, increased bleeding, and unknown to me, Elmiron was damaging my liver and my blood cells. It caused my white blood cells to seriously decrease, (Offical name is Leukopenia) I became anemic, and my blood work showed liver damage. With all of this and my health problems, it nearly killed me. Yes, I do have other medical conditions, (Some related to IC) so perhaps everything combined and caused some problems.
    I have been off Elmiron for a year and a half now, and my blood tests are just barely returning to normal. (thank goodness, since I am trying to get pregnant... hard with IC!!) The manufactuers of Elmiron know it can cause these problems, which is why it says to get blood work done every three months.
    I don't want to scare anyone, but check with your doctor.
    Insist on getting your blood work done!
    Hugs to everyone~!
    Think of all the beauty still left around you and be happy.
    -Anne Frank

  2. #2
    ICN Member vm's Avatar
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    Oh, how frightening for you! I am sorry you went through all of that.

    I have been on Elmiron for 7 years and have my liver enzymes checked yearly - no problems so far. I am sure to continue to have it checked, though. Thanks for reminding us all.

    And really - there are many medications that if taken long term can possibly cause problems for the liver. It's always a good idea to check with our doctors about having liver enzymes checked periodically.
    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

  3. #3
    ICN Member vm's Avatar
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    Here's some info on the liver's role when we take medication:

    DRUGS THAT MAY CAUSE LIVER DYSFUNCTION OR DAMAGE

    The liver is the principal organ that is capable of converting drugs into forms that can be readily eliminated from the body. Given the diversity in use today and the complex burden they impose upon the liver, it is not surprising that a broad spectrum of adverse drug's effects on liver functions and structures has been documented. The reactions range from mild and transient changes in the results of liver function tests to complete liver failure with death of the host. Many drugs may affect the liver adversely in more than one way, as cited below in several listings. The use of the following drugs requires careful monitoring of their effects on the liver during the entire course of treatment.

    http://hepcnet.net/drugsandliverdamage.html
    The site goes on to give a list of medications that can affect the liver.
    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

  4. #4
    ICN Member mary124's Avatar
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    I get my bloodwork done yearly when I get a physical. Been on Elmiron for 10 and never have had problems.

  5. #5
    ICN Member massagedoula's Avatar
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    I get my bloods run every 3-4 months and so far no problems here either with Elmiron! I am glad that they caught that and you are OK. In the Elmiron drug fact, it says "elevated liver enzymes occurred in 2%". So it can happen, though there is a 98% chance you will be OK. Just didn't want anyone to start freaking out about it...But getting a liver panel is a good idea just to make sure you are doing well if you are on long term Elmiron.
    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

  6. #6
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    Crzycatlady

    Thats very good information to get out there. I was on it for about a month and felt like crap so I got off it. Also the hydroxyzine was making my heart beat harder and skip beats so I got off that too.

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