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In pain any scared!

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  • In pain any scared!

    Hi,my IC is very painful. With the lack of Levorphanol for my pain,it has been very hard to find something that works as well.The manufactuer, Roxanne,has said since February 2010,that it would be ready AGAIN. I call them and they say "projected release date at the first of the month,then it's "the middle"then "end of the month!"...I've tried other things but nothing worked as good as levorphanol. And now I want to find something that will get me off all narcotics if possible...any suggestions...I've done Elmiron,DMSO name it.... NOTHING WORKED FOR ME!..I did modify my diet and that helps...but I need to find something other then a pill for the pain. I've been on pain meds since 1997...way too long! Has anyone had one of those implants???And if so did it work...interstem...???There are also other ones but I don't know the names.Thanks Mary Ann Hansen

  • #2
    Hi there,

    soooo sorry to hear about your frusterations no one deserves this. I was recently diagnosed and it has been a loooonnnnng rd. I am kinda in the trial phase of seeing what works....I will list them and maybe something will be there that might help you

    Prescription wise:
    Prosed DS 3x day
    Amitriptyline HCL 25mg at night
    ditropan 5mg at night

    Supplement wise (my husband read about these and so far it seems to be helping)

    Calcium Citrate with magnesium-taken 3x a day before a meal it helps to oxlate acid in foods (plus good for your bones)
    Fish oil with Omega3- said to help IC people to sooth bladder
    Prelief-if I find I am going to be eating or drinking something that is a bladder irratant

    I also so the teaspoon of baking soda with water if I feel a flare or uncomforatableness starting.

    I hope this may help and that you start feeling better.....your not alone


    • #3
      Thanks !

      Keird, I want to thank you so much. I use Prelief and it works sometime...I have not tried the baking soda thing,but I heard that it works well. Can you tell me how to get calcium citrate with magnesium?....never tried omega 3 fish oil,have tried amytriptiline,made me groggy the next day...don't remember the dose...and what is Prosed ds???I never heard of it..ditropan I've taken but I felt that the only thing it did was give me more DRY MOUTH!...YUK!! In fact every med I take say's may cause dry mouth and constipation! There is no MAY IT DOES! I haven't tried vesicare or tovias..they are also for bladder spasm's..which I don't think that i have..when i underwent hydrodistention..they found hunners unlcers,brunn's nest...I had a very severe case of IC..took me 5 years to get a diagnosis,i8 actually diagnoes myself after reading about it in a book!!! Aslo I went into labor prematurely,"they" the doctors said it was a kidney stone!!!!!...but the were able to stop it the labor..this was before my diagnosis of IC
      I will try some of the things that you suggested....I can not continue on this narcotic thing for much longer....Thanks Again,
      Mary Ann


      • #4
        mary ann

        Funny thing (well not really) but since writing to you I was doing some research on drug interactions with what I am now on cause I get nervous and I had read that the FDA was pulling prosed due to the dye. Well after looking it up and seeing all the stuff it interacts with poorly like almost all us IC people use, prelief peridium, amnitripolyne, and so much more, plus the bad side effects of that dye long term. I am actually going to speak to my doc next wk when I see her about switching. I am on ditropan which so far has been good, I will keep you posted as I am on it longer. But before you decide or if you do decide on Proded DS research it a bit. The calicium citrate with magnesium I got at walgreens. make sure it has the magnesium. Glad I was able to help a bit keep me posted