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Elmiron Question *sorry long*

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  • Elmiron Question *sorry long*

    Hi, I've been taking Elmiron since March, I haven't had any side effects, but I don't feel any better on it. My doctor said to give it time, but I think I'm actually feeling worse. When I have to go to the bathroom now it feels URGENT. It will actually hurt and feel like I can't make it to the bathroom fast enough. I pee all day and all night. Then there are other times when I can't go at all and my bladder is distended.

    What my question is - Does anyone know how long you have to take Elmiron, like is it a temporary or lifetime thing? I've asked my psychiatrist and my GP about the drug and both appologized saying they were unfamiliar about this drug, but they knew it was for IC and explained what IC was even though I knew already. My GP looked up the drug in her palm pilot thingy and read me the description, but its the same stuff you find on the internet and doesn't say how long it should be taken for. My urologist is nice, but her office is exteremely busy there are about 5 uros working there and she's always rushing. I think I prob saw her for 3 mins max if that. She said Hello, how are you, read my chart told me I had IC, asked how the Elmiron was....when I told her I notice no difference she said to keep taking it and she gave me 3 refills and told me come back in 3 months. My GP is so patient, she will sit with you for 45 mins to an hour and talk about your conditions and explain them in normal terms nonmedical people would understand. I told her about my experience with the uro and she said unfortunately many doctors are like that. One of the only reasons why I feel stuck with my uro is because for issues between the legs I like to have a female doctor....and shes' one of the few female in our area. A woman at work oddly enough has IC and she said her doctor is great but he's a man that's the only thing stopping me from going to him. When she went to her last appt with him she told him about me and my doctor and he was shocked that my doctor didn't explain the condition, didn't suggest diet or any other tips. I can barely relax when I have a female doc examining me down there, I have to take a few sedatives, but I can't imagine what I'd be like with a man doctor.

  • #2
    I started taking Elmiron May of last year; I was also started on Elavil at that time. My DR informed me that he wouldnt bother asking me about how I'm feeling until I had been taking it for at least 6 months. He also informed me that while I would (probably) be able to take less pills per day (I was started on 3 pills twice per day; am now down to 2 pills taken at night), I'd more than likely be on the medicine for life. Of course this is my personal experience--your Dr is the only one who'd be able to answer your questions accurately based on your personal medical situation.

    Take care...
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.


    • #3
      HI Chick,
      Sounds like you are having a rough time with the Uro. Can you find a local IC specialist? Most good dr.s will sit and explain things and ask if you have questions.
      Elmiron takes 6 to 12 months to even begin to show a difference. It's rebuilding the lining of the bladder so it takes a long time.......because we are still eating and toxins are continueing to go thru the lining wall. My Uro IC specialist told me that it's a life time medication....if you stop taking it things go back the way they were So just be patient and continue with the'll be glad you did.
      Sounds like you might need dg's great stuff! It calms the bladder down so you'll have less frequency. Have you tried the over the counter medication called Azo? it helps calm the bladder too......but not as much as Azo but is great for quick relief...and less bathroom trips.
      Have you started the IC diet? It really does help to find out what's making your bladder flare. It can be other things besides Vit. C, or Calcium pills, Ibuprofen or carbonation....lots of things.
      Good luck and I hope you find a good dr. soon and things get better for you! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


      • #4
        My Uro told me that it does take 6-12 months to start to help, and yes you will be on it forever, unless there comes along something better. I have been on it since 1997, I started with taking 1 cap. 3 times a day but I Uro sent me to another doctor recently and he upped it to 2 caps 3 times a day. Said I was on too low of a dosage for having such a severe case of IC.
        Sounds like you need to find yourself another Uro, preferrably someone who specializes in treating IC. Good luck.


        • #5
          When I first started taking Elmiron I thought it wasn't working as I was ready to call it quits. I am so glad that I didn't. Elmiron took about 6 months before it really helped me. Keep taking it and don't give up I am so glad that I didn't give up.



          • #6
            I've been on Elmiron since Nov and when I went to see my uro in April I told him it wasn't helping but he told me that he wanted me to stay on it at least until my next appt in July. I'm still taking it but I think I'm going to talk to him about stopping it when I go in the next time because I really don't think it helps.

            As for having a male dr that's something that you would have to get over if you can. I used to prefer a female dr but out of nessecity sometimes I had to see a male because that's the dr available. Would you rather keep on seeing a dr who doesn't help you at all because she's a woman or try to get over your fear and see a male dr who would probably help you a whole lot more. There's no question for me, see the male dr but I had to go to the gyn a lot when I was younger so I got used to it and a male dr delivered Griffin.

            I stopped seeing my female gyn for my IC because I didn't really think she was helping me and started seeing my male uro and it was the best thing I have ever done. She wouldn't let me try Elavil, he did the first time I asked and it has helped ALOT

            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


            • #7
              You know... male doctors are just fine in my opinion. I know it is a comfort thing, but consider it. You can meet him and since you already had an exam and IC diagnosis, you may not need as much examination if at all. I started out with only female doctors, but switched to a male gyno. LOVED HIM! He was more gentle than my female gyno. Then I went to a male uro and he was very kind and gentle, considering the region and the symptoms I'm having. I then was sent to another gyno for a second opinion, male, and loved him too. Was sent to a urogyno. I saw his PA first, a woman, and I feel comfortable with her. Then I saw him after starting instillations, oral Elmiron, Atarax, and other meds. He was wonderful. I would not dismiss male doctors. I was incredibly uncomfortable going to a male gyno for the first time (and being uncomfortable with a female gyno made me more worried). It was better in my opinion. It is best to get a doctor that takes time to talk with you, answer questions, give you information, give you instructions, etc. If this other doctor is male, but excellent, consider him! You may love him!

              Your Elmiron question... I was told it is a life-long med (if it works for me). If it does't work, why bother. I am doing instillations, where the Elmiron, lidocaine, bicarb are put into the bladder directly. That is supposed to be best in terms of feeling the effects of Elmiron sooner.

              I sure hope you feel better!
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]



              • #8
                Female Doctors? Geez!

                Two of the dumbest doctors I have ever had were both female. One was a Gynecologist and the other was a Urogynecologist. I have also had a few stupid men, but oddly, thought the men were much more sympathetic than the females who always seemed rushed and preoccupied. Probably because they were juggling home,kids, husband and job? The females also seemed to be out of the office more; sick leave, kids sick, new baby leave, maternitiy leave, blah, blah, blah. I just thought most of them were too high maintainance, and practicing medicine as a part time job. So I started seeing their male partners.


                Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                Diagnosis: IC, PFD (both in remission)


                • #9
                  My internists have always been women and I really like them. One was a DO and the other a MD. They are great. In terms of gyno visits... the male gynecologists are so senstitive and gentle. The women I have had said to me "just relax and it won't hurt that bad". Well, shouldn't that have been a clue? My gyno did an exam and said, you need to see a urologist with those symptoms and a tender urethra. I mentioned to him that the exams are much less painful with him and he said that he has no idea what it feels like, so he tries to respect that. My 2 internists that were female were terrific though. My current one works 4 days a week but the other one I had (before I moved) worked 5 days a week and even makes house calls. You can find some women doctors, but yes, I have seen a few "hobby doctors" out there (men and women).
                  [SIZE="1"][B]Be well, Alyssa :hi:[/B]