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  • Elmiron and nausea?

    I had a really bad Heparin instill experience yesterday and am experiencing PTSD due to the continuing pain The dr mentioned starting me on Elmiron and/or Atarax. I asked him about the nausea and hair loss side effects. He said that the hair loss is not a problem but that the FDA made the makers list it since it's action is similar to another drug that does make your hair fall out?? AT this point my hair falling out is the least of my concerns but anyway I am very worried about the nausea. I have existing GI problems. I've read about emptying out the capsule into water first and he did say this will help. Can anyone here vouch for that? Charisse
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  • #2
    I have heard from many different sources that the elmiron capsule itself is a problem for some and that if the capsule is emptied into water and taken that way, discarding the empty capsule, there are less problems.

    Donna
    Stay safe


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    [3MG]

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    • #3
      I have read many people who have luck emptying the capsules; I was not one of them. However, the naseau passed after a couple of weeks. The heartburn, however, never die. If you have existing GI problems, one thing to watch out for is severe and increased heartburn; I just had surgery due to my year and a half of Elmiron causing a stricture in my esophagus. If you have trouble swallowing while on the drug, tell your doctor!
      I also had pretty bad hair loss, but my doc said it is pretty unusual. I just appear to be one that was sensitive to Elmiron (and that it didn't work for, unfortunately).
      Good luck and I really hope Elmiron works for you!!

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      • #4
        I felt a little nausea the first day or two and a little dizzy, but not enough to make me sick I did stay home and rest, but after that I was fine.
        I think if you take the advice of the other and empty it in water and do I that way it might work for you better than taking it the other way.
        My doctor started me out taking 2 instead of three. You could ask your doc about that too. When you get used to 2 then maybe up it to three. I am still only taking 2 and it seems to be helping a lot!
        Good luck!

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        • #5
          Well the NP didn't give me Elmiron. I'm trying Atarax first and also a 7 day cycle of Doxycycline as she's worried I may have urethritis on top of the IC from the pain of the catheter insertion. I followed the IC diet perfectly yesterday and am in more pain today. I am ready to give up but I'm not sure what that would entail at this point. I'm just so tired of feeling awful. I do have major GI problems so I'm pretty worried about the effects of Elmiron and what it would do for my heartburn Charisse
          The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
          First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
          Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
          Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
          Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
          BABY GIRL 10/28/08 *** BABY BOY 7/8/11

          Comment


          • #6
            I am usually very sensitive to medications. Some give me nausea or upset
            stomach and I was even having a lot of digestive problems that subsided a couple months before being diagnosed and taking elmiron. The elmiron doesn't seem to bother me, so I hope it won't you if you decide to take it. It has given me so much relief

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            • #7
              I have been taking Elmiron for about a month now and have been extremely nauseated and sick from it. The doctors say I am one of the rare ones to feel these side effects for so long. I have to take a couple days off the meds just so we can make sure that is the true cause. I personally know it is. I hope it works better for you than it is for me.

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              • #8
                Hello, I hope you feel better. Did you try opening the capsule and drinking it in water? I've heard that helps. I also only take two, one before I eat breakfast and one before dinner. Good luck and take care!
                Gwen

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                • #9
                  I was extremely nauseated while on Elmiron. I made it about a month before I just couldn't take it anymore. I hope it works for you without these awful side effects.
                  Lauraheather

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