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  • #1

    elmiron and back pain?

    Has anyone experienced lower-middle back pain (in the kidney area) while on elmiron? It's not a side affect that's mentioned. But I was on elmiron for about a month and a half and during that time developed the back pain. At the time, I though nothing of it and just went to my chiropractor. (It's not a kidney infection.) Eventually, the back pain went away.

    I took a three week break from elmiron for some other side affects and just restarted it two weeks ago. The last couple of days that back pain is back (no pun intended) and it's really uncomfortable!

    I just looked at my pain/meds calendar and realized that the initial back pain started about two weeks after I started elmiron the first time and subsided during the 'break.'

    Time to take a break again and see if it's indeed causing the pain. The nausea and slight headache, I can deal with. But, the back pain is miserable and it's only getting worse.
    mom_in_ma
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  • #2
    I have lower back pain whenever my bladder is bothering me and sometimes the back pain actually MAKES my bladder hurt. I've been on Elmiron since Nov though and I don't know if it's actually causing the back pain, never thought of that.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      Me too

      Yeah, I've been having this problem and wondering about it too. Especially since someone mentioned to me that Elmiron can be damaging to kidneys over time. Does anyone know if that is true?

      I'm planning to ask my urologist about it on my next visit.

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      • #4
        I've been taking Elmiron ever since it was approved (14 years, ?) and, Yeah, I get terrible back/kidney pains, but I always attributed it to having a flare. I don't have the back pain normally, just now and then. The pains have been getting stronger though, as time goes on. Guess maybe I should rethink the situation..........

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        • #5
          Hello. I am currently having this plan. I was really worried because I heard about the effects on kidneys as well. I noticed that over the past, two days or so, that I would have really bad urgency, but little would come out. Normally when I go I go, so this was weird for me. Usually the urgency matches what I expel. If that makes sense. Now what I expel is very little compared to the years that i have been living with my severe IC. I naturally thought it was a kidney infection because I know that you are supposed to take a lot of water with Elmiron but I cant because I just don't drink a lot naturally. Is this pain something I should be worrying about?
          Medicines Taking
          • Elmiron 3x a day
          • Amitriptyline 1x a day
          • Pyridium as needed


          “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer

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          • #6
            Jessezgrl, how long have you been taking Elmiron? My back pains didn't start until about two years ago, after taking it for as long as I have. Sometimes they are really intense and just knock the spunk out of me, other times I just try to block the pain out and go on. I'm afraid to stop taking Elmiron, but also afraid of damaging my kidneys. I wonder if this is a common side effect and just not mentioned..... How many others have this problem, too? Keith

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            • #7
              I have been on Elmiron for about a month now. They came back a little today, but it went away, but it was really uncomfortable when it happened.
              Medicines Taking
              • Elmiron 3x a day
              • Amitriptyline 1x a day
              • Pyridium as needed


              “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer

              Comment

              • #8
                Re: elmiron and kidney problem?

                I have been taking Elmiron for 24 years now (!) and it has seemed to help until recently. Turns out, I have been leaching calcium from my bones via the kidneys (called hypercalciuria). This may be why my bladder feels extra irritated. I am worried that the Elmiron did do something to the kidneys over time, perhaps. This is a bad condition b/c I now have osteoporosis (only 48 y.o.) and not absorbing calcium. This is causing weird symptoms like heart palpitations and strange depressive sensations. It is scary. The rheumatologist doesn't feel I have hyperparathyroidism and I do plan on going to a nephrologist once and for all. Just wondered if anyone had been on Elmiron for long and if they have these kidney or bone issues. Thanks.

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                • #9
                  Re: elmiron and kidney problem?

                  Originally posted by leela14 View Post
                  I have been taking Elmiron for 24 years now (!) and it has seemed to help until recently. Turns out, I have been leaching calcium from my bones via the kidneys (called hypercalciuria). This may be why my bladder feels extra irritated. I am worried that the Elmiron did do something to the kidneys over time, perhaps. This is a bad condition b/c I now have osteoporosis (only 48 y.o.) and not absorbing calcium. This is causing weird symptoms like heart palpitations and strange depressive sensations. It is scary. The rheumatologist doesn't feel I have hyperparathyroidism and I do plan on going to a nephrologist once and for all. Just wondered if anyone had been on Elmiron for long and if they have these kidney or bone issues. Thanks.
                  I haven't heard of kidney issues from elmiron, but I couldn't take it due to a headache side effect. Thankfully, there are now medications that can help with osteoporosis --- is it another one of those things that attack us at menopause? Just an aside --- if you do go on medications for osteoporosis, be aware that you need to talk with your doctor if you need major dental procedures.

                  Warm hugs,
                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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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.                   [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

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                  • #10
                    Re: elmiron and kidney problem?

                    Thank you, Donna. Sorry you couldn't take the Elmiron (altho who knows if it's all that good for us in the long run). The only side effect I had/have is thinning hair. And maybe this kidney thing. I wonder if we'll ever know. I started menopause early so I am premature osteoporosis. The meds won't help me b/c my kidneys aren't absorbing the calcium or the special medications into the body. Just coming out in my urine!

                    Interesting thing is, I cut back on my calcium (since I'm peeing it out anyway) and my bladder has been fine (hate to jinx it). I appreciate the input.

                    Hugs back,
                    Lisa


                    Originally posted by ICNDonna View Post
                    I haven't heard of kidney issues from elmiron, but I couldn't take it due to a headache side effect. Thankfully, there are now medications that can help with osteoporosis --- is it another one of those things that attack us at menopause? Just an aside --- if you do go on medications for osteoporosis, be aware that you need to talk with your doctor if you need major dental procedures.

                    Warm hugs,
                    Donna

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