IC & Me

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  • TaraMaria
    TaraMaria Posts: 1,975
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    I believe it. My doctor has mentioned it before now that I've looked at the website. But he has been trying this new topical medication that he wanted me to give time to work. Like I said its been better. I just know its not a permanent fix. Did you drive all the way to Washington DC? I would definitely go all the way out there for relief.

    How often do you have flare ups now with the IC?
  • kath711
    kath711 Posts: 712 Member
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    I flew. Luckily, I have an aunt there and stayed with her. You definitely need someone there for you to help. I had a visit with the doctor preoperative on Tuesday. Surgery was on a Thursday and he wanted to see me again the following Monday before I could leave. My mom went with me. I had to sit on ice for the first 48 hours. it was not pleasant. But cured! At the time, i also had an eight month old as well as a 7 and 4 year old. They stayed with dad in STL.

    Flare ups usually once or twice a month depending upon stress and sometimes TOM but not always. Dont know what I would do without Elmiron. I know it is what has been helping me. Would be nice if it were cheaper and keep waiting for the generic to come.
  • sandyvanderstelt
    sandyvanderstelt Posts: 82
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    i wish so bad there was a generic for elmiron, i cant take it because it costs over $300 a month and i have no insurance.... what is VV??
    i am having a really bad couple days, bladder pain is so bad. i broke down in tears yesterday it was so bad and i cant do anything about it. do any of you take anything for immediate pain relief? my dr wont prescribe me anything and tylenol is not cutting it.
  • sandyvanderstelt
    sandyvanderstelt Posts: 82
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    oh and tara yes, the bladder washes are the same as instillations
  • kath711
    kath711 Posts: 712 Member
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    i wish so bad there was a generic for elmiron, i cant take it because it costs over $300 a month and i have no insurance.... what is VV??
    i am having a really bad couple days, bladder pain is so bad. i broke down in tears yesterday it was so bad and i cant do anything about it. do any of you take anything for immediate pain relief? my dr wont prescribe me anything and tylenol is not cutting it.

    I am so sorry for your pain, and I can relate.

    Found this on the ICN network, my give it a try:
    They make Elmiron
    Johnson & Johnson Patient Assistance Program
    Johnson & Johnson Health Care Systems
    PO Box 221857
    Charlotte, NC 2822-1857
    1-800-652-6227

    Eligibility Critera: The patient must have no prescription coverage for the medication and meet income guidelines that are not disclosed. The patient must also be a US resident.

    Other Program Information: The medications are either sent to the doctor’s office or the patient is sent a pharmacy card. The company automatically sends out refills. Once a year a new application with documentation is needed.


    VVI is vulvar vestibulitis, which is pain upon contact to the vestibular area. VVI is having this primarily and not secondary to a trauma or infection. you can read it more in depth at www.ourgyn.com as Dr. Goldstein explains it much better than I can.
    It apparently is related to IC as an autoimmune disorder and the tissue in the bladder is similar to the tissue of the vestibule.

    My doctor prescribed Urelle tablets for immediate relief. Provided some relief. Also, soaked in a lot of baths, warm compresses over area, took naps. I think the stress from having this wears you down and need more sleep to help with the stress.
    I also think it is sometimes hard to break the pain cycle and sometimes need stronger medication for a while just to give yourself a break and chance to break the cycle. Might look into a pain specialist if can afford it.

    hope this helps!
  • TaraMaria
    TaraMaria Posts: 1,975
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    i wish so bad there was a generic for elmiron, i cant take it because it costs over $300 a month and i have no insurance.... what is VV??
    i am having a really bad couple days, bladder pain is so bad. i broke down in tears yesterday it was so bad and i cant do anything about it. do any of you take anything for immediate pain relief? my dr wont prescribe me anything and tylenol is not cutting it.

    *HUG*

    I'm so sorry for your bad couple of days. I hate crying over IC. Its so out of our control and so incredibly painful. My doctor is very careful how often he prescribes me anything but he does. I can't believe he won't give you anything. What about even a shot? I can't remember what they called it...Taradol? Its like an anti inflammatory pain med. I have vicodin which he does warn CAN make the pain worse if taken too much. But he prescribed me a bottle last March and I have the same bottle. I'm very careful with it. I just want to be able to have it when the pain strikes. I really want to have a word with this doctor of yours...

    I wish installations helped me... :o( This week has been better then last week. Leads me to believe swimming is causing me to have some pain. GRRR...THAT makes me very upset. I haven't gotten to swim since Saturday. So far only slight pain this week. Last week I was borderline miserable, swam 3-4 times. I love swimming....I'm not sure what to do...:o(
  • TaraMaria
    TaraMaria Posts: 1,975
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    I had a cysto today. Oh my gosh...So much pain. The doctor came in and told me that my bladder has had a relapse. That the Elmiron is doing nothing for me and that I'm officially one of his worst patients.

    He has upped my dosage from 2 Elmirons a day to Elmiron 4 one day, 5 the next. He also prescribed me something else...I think it starts with an A. He prescibed it for me a year ago when I had my first cysto done in March (I think I wrote in my first post I had it done in February and I was wrong...it was March.) Also more pain meds... :o( Doesn't seem to be touching anything tonight and I've been bleeding non-stop since the procedure. :o( Okay! Just had to vent a bit. :o)
  • kath711
    kath711 Posts: 712 Member
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    I had a cysto today. Oh my gosh...So much pain. The doctor came in and told me that my bladder has had a relapse. That the Elmiron is doing nothing for me and that I'm officially one of his worst patients.

    He has upped my dosage from 2 Elmirons a day to Elmiron 4 one day, 5 the next. He also prescribed me something else...I think it starts with an A. He prescibed it for me a year ago when I had my first cysto done in March (I think I wrote in my first post I had it done in February and I was wrong...it was March.) Also more pain meds... :o( Doesn't seem to be touching anything tonight and I've been bleeding non-stop since the procedure. :o( Okay! Just had to vent a bit. :o)

    I am so, so sorry for your pain. I remember how horrible the cysto was and how painful the rest of the day was. I also remember days with no relief. I am lucky enough that the Elmiron has so far worked well for me so I really do not know much about other treatments but has your doctor suggested Elmiron or heparin instillations? I heard those have worked for others with more severe cases. I am also on Vistaril that helps with inflammation.

    After i had my vestibulectomy, the doctor (vulvovaginal specialist) asked me if I was planning on having any more children. I said no but he said if I ever did become pregnant he could go in and stretch my bladder which might help. I know that sounds crazy and since I was not planning on getting pregnant I did not follow that up. He definitely knew I had IC so not sure how that would help. That might be something to ask your doctor.

    I always feel more pain when I am stressed as well and with the doctor saying you are such a bad case can make for tension so try to take a lot of nice warm bathes and really pamper yourself to get your pain soothed some. I also notice that the winter months seem to make IC worse hopefully as spring approaches it will ease up some too.

    Anytime you need to vent, send me a note!!

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