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Had my Uro appt today and he started DMSO

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  • #16
    I had the DMSO treatments back in '95. Now, keep in mind that that was a very long time ago (Elmiron wasn't even around then), but they used a 50 to 60% solution and had me hold it for 45 minutes to an hour. It was mind numbing pain and it didn't help. At all. BUT here it is all these years later, and I don't have any damage from it. (Maybe because I only did the one six week series?).
    Hope you feel better soon!!

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    • #17
      Oh thanks Girl, I know that not everybody has had bladder damage because of the DMSO. I just don't think that I'm willing to take that chance with the 50% solution when there is research showing that it can happen.
      I feel like I have to baby my bladder. I have had surgery preformed on it and then the IC, I don't want to risk anything worse going wrong. I guess we'll see what happens when I go in for my 9:20 appt tomorrow morning. I almost home that we decide not to continue them because I am NOT looking forward to going back to work if I have it done but I really can't financially afford to miss work because I've missed alot lately. Guess I'll just make sure to take plenty of water with me and my AZO and have heating pad ready.
      Christine



      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

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      • #18
        My uro used to set aside Friday afternoons strictly for DMSO patients; many (including me) couldn't go to work for a couple of days because the smell was so strong and lasted 2-3 days. Maybe if you continue, you could schedule for Fridays?

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        • #19
          I think because they started them last Tuesday they want to keep them a week apart. I got my next one scheduled for the end of the day on Tuesday and then Wednesday is the 4th of July so I don't have to work that day. I was fine the day after, it was the day of that I felt crappy last time and now I don't feel so hot today either.
          Christine



          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

          Comment

          • #20
            I have had DMSO treatments about 4 times since 1992 (like someone mentioned before Elmiron was even around) they did help me for the first 3 times around--but the last time around unfortuntely they didn't) I also remember that the nurse told me to hold it for 45 minutes to an hour! Here I see people say only hold it for 15minutes. When I did have them done I would schedule them on Friday afternoons this way I could go home and have the weekend to recover, as yes it did hurt a little, having the cath. put in, but it also depended on the nurse as well, I remember one nurse who just jammed it in(ouch!!) but the others they gently guided it in). Good luck as I really hope they help you as much as they helped me at first.

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