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Best week in 6 months - Elmiron or gelnique?

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  • #1

    Best week in 6 months - Elmiron or gelnique?

    So I just completed the best week I've had in six months! I feel back to my "normal" which is never really normal like someone without IC but its close and I can eat most foods and drinks with some limitations. Never eat citrus, stick to low acid coffee, not too many tomatoes, no carbonation or pop or flavored water but other then that mostly a normal diet with foods as drinks have always bothered me more.

    I'm literally going hours without thinking about my bladder. Its so refreshing!!!

    I've been on elmiron for 6 weeks and I've been on the gelnique for one week now and have to say I'm thrilled with it. I don't know what is helping me more but am about to find out as I have a minimal procedure next week but the doc said no blood thinner even if its weak so starting today stopped the elmiron until next Tuesday.

    If its the elmiron thats making me feel so GREAT then i will never go off of it ever in my life except for these type of situations. I feel I've tried so many things over the months to no avail. I will post in a few days to say which it is. If it is the gelnique then its such a simple solution for me without side effects. If it is the gelnique then that would lead me to believe that most of my discomfort was coming from constant miniscule spasms that this medicine has alleviated.
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf
    Tags: None
  • #2
    That is great to hear.. I wish I could take Elmiron but just makes me sick.. I wonder if we can get Gelnique in Canada.. I am using the patch but it leaves a red spot for a few days.. and I don't really like that...

    I am feeling better since the Cysto/hydro--it took about 3 days but certainly am starting to notice not so much pain..anything is an improvement..

    Take care
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
    Tried DMSO instill- had 5 out of 6
    Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6th 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Metformin (prediabetic)
    Sinequan (depression)

    Comment

    • #3
      Sounds like you're doing really really well. So glad to hear that. The Gelnique sure does stop all those pesky spasms doesn't it? I do get a little tired from it, but I do that on any anticholinergic. Let us know how it goes after being off the Elmiron for a while. I'll be curious to see which one was helping you the most. Maybe it's the combination of the two together?

      Comment

      • #4
        Glad the cysto/hydro worked for you!
        If you can get the gelnique I think it works much better then the patch. Its double the meds and yes the red sore spot after the patch was bothersome. I think the gelnique has only been out for a couple years now.

        Originally posted by lalarainbow View Post
        That is great to hear.. I wish I could take Elmiron but just makes me sick.. I wonder if we can get Gelnique in Canada.. I am using the patch but it leaves a red spot for a few days.. and I don't really like that...

        I am feeling better since the Cysto/hydro--it took about 3 days but certainly am starting to notice not so much pain..anything is an improvement..

        Take care
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment

        • #5
          good to hear you feel like the elmiron is working for you. i do also. ive had some better days lately being on it than before without it.
          Newly IC diagnosed as of February 2011.

          Medications I'm on that seem to work:
          Zoloft- one once a day
          Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

          Failed Meds:
          Elmiron-after 4 months,digestive side effects got to be too much
          tramadol-allergic
          DMSO treatments(5-6)
          probiotics

          THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
          AROMATHERAPY-candles,incense
          Village Naturals Aches and Pains Peppermint Bath Salts
          Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

          ACUPUNCTURE/HERBS
          Significant pain relief so far.

          MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

          Add me on facebook Angela Hasic

          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Lord, make me an instrument of your peace;
          where there is hatred, let me sow love;
          when there is injury, pardon;
          where there is doubt, faith;
          where there is despair, hope;
          where there is darkness, light;
          and where there is sadness, joy.
          Grant that I may not so much seek
          to be consoled as to console;
          to be understood, as to understand,
          to be loved as to love;
          for it is in giving that we receive,
          it is in pardoning that we are pardoned,
          and it is in dying [to ourselves] that we are born to eternal life.

          Comment

          • #6
            I'm curious about the Gelnique...

            Did it start working for you immediately? I was doing Toviaz 4mg and it was okay but not great relief. I'm also doing instills (have done 6) with no relief of my urgency/frequency. I'm on day 1 of gelnique and I'm already feeling lots of urge and have leaking.

            Comment

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