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Please help!! Should I continue with RIMSO instillations?

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  • Please help!! Should I continue with RIMSO instillations?

    I just had my second instillation on Monday. The bottle in the Dr's office said RIMSO 50. On Monday, after the instillation I was in EXCRUCIATING pain afterwards. I was sweating and turned pale. I painfully held in the instillation for 25 minutes. I took Tramadol for pain and 2 UTA pills afterwards. It took several hours before I felt any relief. It was horrible!!!!! I am supposed to have two more instillations. I am so scared to feel that intense pain again!! Please help!

  • #2
    It's been years since I've had DMSO instills, but I think I remember someone saying that the 50 % solution is too strong and that the 25 % solution should be used. You might want to do a search on this site and see if you can find out any more information.

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    • #3
      The first 2 instillations of Rimso tend to be the most painful, as your bladder's mast cells are dumping out histamine. With each subsequent weekly instillation, your cells have less & less to release, so they are less painful.

      That said, I did not have symptom relief from the IC until about 10 days after the series of 6 once a week treatments was over. I had the DMSO cocktail instillations (RIMSO) once a month after that for a year. Each time I had an instillation, I had it on Friday afternoon, so I could relax that night & the next day, since I never felt good afterwards. It did help me, but not as much as the heparin home instillations I tried next.

      Anyway, hoping you will have good results & are feeling better soon-
      Kadi

      -------------------------------------------------------------
      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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
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      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

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      • #4
        I'm assuming that they are diluting the DMSO with a water solution. When I was on DMSO, they instilled lidocaine first and it really helped with the discomfort. I was treated with DMSO for several years before it stopped helping as much. And yes, my first few treatments were very painful.

        Donna
        Stay safe


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        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]

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        • #5
          I have been using DMSO mixed with Solumedrol (a steroid) every 3 weeks for the past 15 years. The first few treatments actually made me worse before they started to help. My Dr. instills lidocaine (liquid) in my bladder and leaves it in for 15 minutes prior to instilling the DMSO & Solumedrol. I think the lidocaine really helps a lot so you might want to ask your Dr. to try it. My Dr. also gives me a shot of Demerol before he even instills the lidocaine. I always have it done on Friday (actually going tomorrow) so I have the weekend to relax. DMSO treatments have been a lifesaver for me - I used to urinate between 60-80 times a day.

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          • #6
            I am sorry you are having a hard time with the instillations. I also am having complications with my instills(could not pee afterwards and swelled my bladder). But I did not use RIMSO instills, I had the heperain cocktail.
            I am not sure what to tell you as far as what you should do. I know it is a very hard decision on whether to proceed or not. If you do proceed, maybe see how you are after the next instill and if you still have significant pain, then maybe the RIMSO is not for you. I just dont know, but I understnad what you are going through. I still have to decide if I should do another instill. Good luck and hope it all works out for you.
            Jen

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            • #7
              I did DMSO last year. I remember my doctor and the nurse telling me to hang in there until at least the fourth. If at that time it wasn't better then I could quit. I did get a bit of relief from them although it took up until the 4th or
              5th. Something I did before the instill was take pyridium about 30 minutes before that way things wouldn't hurt quite as bad. Ask your nurse about this as some are very picky about this. When I got home after the instills I would either sit in a tub of warm water or lie down with my heating pad just to help me relax.

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