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  • Roxie2007
    replied
    HI jbe3,
    We buy my freeze dried aloe vera is the New Chapter brand from House of Nutrition (it's a yahoo store). I've been using it for 3 yrs now and love it. It helps replace the bladder mucus lining, similiar to what Elmiron does. Roxie

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  • JBE3
    replied
    Thank you for the suggestions and for the encouragement. I am going to talk to my uro about the instills...

    Roxie-where do you find the freeze dried aloe vera? it sounds really appealing as an alternative to meds. i'm always for that!

    Leave a comment:


  • Paininthe*.*
    replied
    I've been taking Elmiron for a year now. No nosebleeds or increased frequency though. Side effects for me are diahreah/gas, sometimes blood in stool. I tried stopping the Elmiron once, and noticed an increase in symptoms. I'm sorry it didn't work for you...maybe instills of heparin are worth trying next?

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  • ICNDonna
    replied
    Some people find that the elmiron capsule is the problem. If they empty the contents of the capsule into water and take it that way, the side effects are much less (discard the empty capsule).

    What was the elavil dosage you tried? It comes in as low a dosage as 5 mg; if you were prescribed the usual 25 or 50 mg and it helped your symptoms, a much lower dosage might work without the side effects.

    We are all so very different that it's impossible to predict how a particular treatment will work.

    Sending healing thoughts,
    Donna

    Leave a comment:


  • Sarojini
    replied
    When I took Elmiron, I had no side effects whatsoever. However, when I started doing heparin/lidocaine/bicarb instillations at home, I went off Elmiron, since the purpose of the instills and the Elmiron are the same... I didn't want to waste money on redundant treatments Besides, the instills give me more relief anyway.

    You may want to ask about doing those. Some doctors do add Elmiron to the instill mix, as Traceann said... that may work for you as well.

    Hope you find a good treatment option!!

    Leave a comment:


  • Roxie2007
    replied
    HI! You might try Freeze dried Aloe Vera. It does the same thing for your bladder that Elmiron does but it does it naturally. It helps rebuild the muscus lining.
    I've been on Elmiron but didn't have any side effects. Sorry to hear that you did. That's the hardest part about IC.......every one of us has such different problems and reacts to the medication so differently. Good luck to you! Roxie

    Leave a comment:


  • traceann
    replied
    Hi Becky! I didn't have those kinds of side effects, but I wanted to suggest maybe talking to your doctor about having the Elmiron instilled directly into your bladder, instead of taken orally - that way it's not going through your system. Just a thought you might want to entertain!

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  • JBE3
    started a topic Side Effects

    Side Effects

    I was diagnosed with IC in Sept 2004. My uro put me on Elavil and Ditropan XL. I also started the IC Diet and love it. It's made a big difference in my pain. Recently, I had to go off Elavil because of the side effect of being sleepy ALL DAY. I have a young child, so I needed to be more alert. So, we thought we'd try Elmiron. Within a day or two of starting the Elmiron, I started having really bad frequency, especially at night. And, I began having nose bleeds two or three times a day. And, I was getting diarrhea from just about everything I ate. I stuck it out for a month, but the frequency got so bad, I wasn't sleeping most nights. So, I stopped taking it.

    I am frustrated, though, because I know that Elmiron can help aid the repair of the bladder lining. Elavil was just masking my pain, but I was excited about Elmiron actually helping to heal my bladder a bit. Has anyone else had these kinds of side effects? And, if so, do they go away?

    Any help is greatly appreciated.

    Warm Regards,
    Becky B.
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