Announcement

Collapse
No announcement yet.

Elmiron or something else?

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Elmiron or something else?

    Hello,
    It's been a bit since I've posted. I've seen some improvement, particularly in the last month. My primary symptoms are freq/urgency and some urethral tenderness. I've only seen my primary care and OB/GYN doctors regarding this issue (they've been a great help). As of July, my GYN put me on 50-100mg of Atarax daily. This, I believe, has made a real difference.

    My voids are averaging about 12-13 now in a 24 hour period on my good days, and on those good days, I don't "feel" my bladder--hurrah! However, I will be seeing an urologist on Friday to inquire about other treatments, specifically Elmiron and/or Elavil. I hope with additional treatments/medication I can develop more consistency in how I'm feeling.

    Question 1- Is Elmiron something one has to take indefinitely, with perhaps a few "breaks" from time to time?

    Question 2-What experiences have you all had with Elmiron vs. Elavil for frequency?

    As always, many thanks!

    ____________
    Symptoms since March 2011
    IC diagnosis- May 2011
    Current treatments:
    Atarax (50-100 mg/daily)
    Cystoprotek
    Desert Harvest Aloe
    IC Diet--still working on finding triggers
    March 2011-Symptoms began
    May 2011-Tentative diagnosis by OB/GYN
    October 2011-Confirmed diagnosis -- IC/PFD

    Current treatments:
    Elmiron- 300 mg (Began 12/11)
    Hydroxyzine- 50-75 mg (Began 7/11)
    Tizabidine- 2mg 3xTID, if needed (Began 12/11)
    IC Diet-Began 5/11
    Pelvic Floor Therapy-Began 12/11

    Current Supplements:
    Cystoprotek
    Magnesium
    Fish Oil
    Biotin
    Tags: None
  • #2
    Thank you, Briza.

    I have been leaning more towards Elavil, and trying to ascertain if I have any more dietary/environmental triggers. I know Elmiron has helped many people, but I still feel a bit hesitant to take it.

    I'm finally getting accustomed to the drowsy effects from the Atarax, so thank you for describing how drowsy you felt with Elavil initially! However, not getting up at night to pee would be so wonderful! It's the small things....
    March 2011-Symptoms began
    May 2011-Tentative diagnosis by OB/GYN
    October 2011-Confirmed diagnosis -- IC/PFD

    Current treatments:
    Elmiron- 300 mg (Began 12/11)
    Hydroxyzine- 50-75 mg (Began 7/11)
    Tizabidine- 2mg 3xTID, if needed (Began 12/11)
    IC Diet-Began 5/11
    Pelvic Floor Therapy-Began 12/11

    Current Supplements:
    Cystoprotek
    Magnesium
    Fish Oil
    Biotin

    Comment

    • #3
      I tried elavil, but had to stop it after about a day and a half --- I had a severe reaction with blood pressure at dangerously high level. I called my doctor and he said no more elavil, even at the low dose I was taking.

      Those who are helped by elmiron usually continue taking it, sometimes at a lower dose. It's not a permanent fix, but it has given some people back their regular lives.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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

      Comment

      • #4
        Briza---I would love to take Pyridium. I discovered early into this issue that I'm allergic to it, unfortunately. I do feel that the hydroxyzine has helped quite a bit. Since I've started taking it, I've had days and (up until last night) weeks where I barely noticed my bladder. I was still urinating more than average, but I didn't have that terrible pressure and tenderness.

        Donna--it's amazing what a sleepless night will do to you. At this point, I think I would take both if that's what the doctor suggested!

        Thanks to you both,
        T.
        March 2011-Symptoms began
        May 2011-Tentative diagnosis by OB/GYN
        October 2011-Confirmed diagnosis -- IC/PFD

        Current treatments:
        Elmiron- 300 mg (Began 12/11)
        Hydroxyzine- 50-75 mg (Began 7/11)
        Tizabidine- 2mg 3xTID, if needed (Began 12/11)
        IC Diet-Began 5/11
        Pelvic Floor Therapy-Began 12/11

        Current Supplements:
        Cystoprotek
        Magnesium
        Fish Oil
        Biotin

        Comment

        • #5
          I thought I would send an update on my first urologist visit.

          After getting recommendations from both my ob/gyn and primary care doctors, I had fairly high hopes.

          And, now I'm a bit confused!

          He really pushed the hydro. I'm not adverse to it, but I wanted to try the diet and perhaps another med to see if my situation would calm down first. I could tell he was disappointed. He was EXTREMELY adamant that the hydro is the way to go. He flat-out stated he does not like to give meds, and feels that a hydro every two years or so is a better treatment of IC.

          He was dismissive of Elmiron. He said he only prescribes if all other treatment has failed.

          He thought the 50 mg of Atarax that I've been taking is too much. He wrote a script for 25 mg instead.

          He's never heard of Cystoprotek, yet there was an advertisement for Cysta-Q in his office....?

          So... I walked out of there with a prescription for Prosed....and a whole lotta confusion.

          One encouraging thing that he did say is that, in his experience, most IC patients reach a stabilizing point and do not progress.

          Off now to research Prosed. I haven't looked at anti-spasmodics too closely since I'm allergic to Pyridium.
          March 2011-Symptoms began
          May 2011-Tentative diagnosis by OB/GYN
          October 2011-Confirmed diagnosis -- IC/PFD

          Current treatments:
          Elmiron- 300 mg (Began 12/11)
          Hydroxyzine- 50-75 mg (Began 7/11)
          Tizabidine- 2mg 3xTID, if needed (Began 12/11)
          IC Diet-Began 5/11
          Pelvic Floor Therapy-Began 12/11

          Current Supplements:
          Cystoprotek
          Magnesium
          Fish Oil
          Biotin

          Comment

          • #6
            Briza,

            I'm going to try the Prosed to see if it helps. From reading the boards, some folks have found relief, particularly with urethral discomfort.

            But, yes. I will probably see another doctor. In fact, a helpful member here gave me the name of her doctor in my area. He must be good! It's going to take me months to get in.

            After getting this recommendation by two doctors I trust, I'm just a little shocked at his attitude regarding treatment.
            March 2011-Symptoms began
            May 2011-Tentative diagnosis by OB/GYN
            October 2011-Confirmed diagnosis -- IC/PFD

            Current treatments:
            Elmiron- 300 mg (Began 12/11)
            Hydroxyzine- 50-75 mg (Began 7/11)
            Tizabidine- 2mg 3xTID, if needed (Began 12/11)
            IC Diet-Began 5/11
            Pelvic Floor Therapy-Began 12/11

            Current Supplements:
            Cystoprotek
            Magnesium
            Fish Oil
            Biotin

            Comment

            Previous template Next
            Working...
            X