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  • Florinef,

    Does anyone take florinef and if so does it bother the IC. My doctor wants to put me on it for low blood pressure because of CFS/FM. I`m also wondering if there is a good list somewhere of what meds and supplements irrate the IC?


  • #2

    Ok, I`m getting a complex here. This is the second question I have asked with not one reply. My feelings are hurt and I really need some imput. I feel like I`m invisible here or something.



    • #3
      Sorry Sandy,
      I can't answer your question at all because I don't have low blood pressure but just wanted to let you know that you're not invisible. to ICN! I'm sure you'll get a reply if someone has been on that med.

      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


      • #4

        I tried 1/2 of the smallest Florinef pill possible (for my medical condition of POTS), and it hurt my bladder very much.
        Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

        Claritin 10 mg/AM for MCAS and allergies
        Aciphex 20 mg in PM for GERD
        Zantac 75 mg, one at night for MCAS and GERD
        Singulair 10 mg in AM, for MCAS & allergies
        Zyrtec 5 mg/PM for MCAS and allergies

        Non-Medicinal Helps:
        glucosamine 500mg/MSM 500mg 2 X/day
        I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

        I can do all things through Christ which strengtheneth me. (Phillipians 4:13)


        • #5

          Thank you griffsmommy and future hope. Yay, I`m not invisible after all. :woohoo: Thanks for the welcome.


          • #6
            Welcome to the board

            I don't have low blood pressure so I can't help you on that one, but I want to say welcome and we are all here to support you
            Miss Bessie

            Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

            Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

            Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


            • #7

              Thanks for the welcome Octoberfarm. I appreciate it. I have Fm/CFs along with the IC and it gets hard to balance it all. I don`t know what I would do without these support boards.



              • #8
                Hi, I take .4 of florinef everyday and we are still trying to figure out what caused my most recent flare. Probably not the florinef but I am not sure. I would introduce it slowly, just take a tiny bit for a few days and see how you do. Good luck!!


                • #9

                  Thanks for your reply. I still haven`t started it. I read somewhere that it pulls potassium out of your body. That ends up in the bladder and I think potassium is an irritant of IC. usually. So, I don`t know if I`m going to take this stuff or not.