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  • DMSO questions

    Just finished my 3rd DMSO/heparin instill on Fri.
    Held it in for 13 minutes, cuz it burned so bad
    (instead of 15). Still making symptoms worse.
    They want me to try all 6 before I stop. I am
    wondering how many instills others have tried, before they
    determine its not helping? It hasn't made things
    unbearably worse, but definitely worse.

    The frustrating things is that since I had my
    cysto/hyrdo on Jan 7, all symptoms are so much
    worse and don't seem to get better (even though
    I am sticking on the elim. diet, taking Detrol LA,
    Elmiron (which is too soon for it to work) and
    now trying instills.

    Thanks again for your help,

    Stacy

  • #2
    Hi Stacy,
    I am doing DMSO myself right now and having the same experience. I did 4 and then took 2 weeks off because the 4th was pretty bad. However,a few days after the 4th, I actually got a good nights sleep so I am encouraged that they may provide some relief eventually. Hang in there,
    Cath
    One day at a time

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    • #3
      at first i couldnt stand the heparin treatment they was doing at the doctor office after four i stopped because i kept getting infection and they hurt so badly a year later i'm doing them at home one to three times a day and they are helping me know do you think that maybe you got an infection? I hope things work out for you soon. ((((((hugs)))))))
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.





      I have IC, but IC doesn't have me anymore!

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      • #4
        DMSO didn't work for me. Drinking a lot of water afterward helps. I haven't tried the others. Maybe DMSO so soon after the hydro/disten. was too much. Maybe you should take a couple of weeks off. I think you need to recover from the cysto. first. Good luck!
        carly

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        • #5
          I did 5 DMSO's...the 4th one landed me in the E.R. from dehydration. It didn't work for me, if anything it made my symptoms worse, but please remember everyone is different. Some people go into remissions with their treatments. I just wanted to throw in that you should drink A LOT of water--more so than usual--after your treatments. Good luck.

          Hugs,
          Jess
          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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          • #6
            My symptoms were worse when starting the treatments. My 4th and 5th treatments seemed even worse than the previous ones, but a few days after the 5th I felt a little better. I ended up doing 8 weekly treatments and then went to once a month. Now they are still painful, and I take pyridium plus and tylenol 3 right after the treatment, and the next day I feel some pain. Within a few days I start to feel good again.

            But for me I now feel much better than I did before starting DMSO. I can be semi-normal for most of the week. I only wake up once to go to the restroom at night, and only feel burning, urgency and pain a few days a week instead of all the time. Sometimes I'll go several weeks without taking Pyridium or pain pills. That seemed impossible before DMSO.

            But, I still have to follow the IC diet very strictly. I had hoped it would work better than it has but, without it, I would not be able to work, or drive or do anything.

            Good luck with you. I hope it works, but if not don't give up. Something else will.

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            • #7
              For me, DMSO is a very mixed bag. On the one hand, I have a delayed positive effect but the flare in the meantime cancels out the good part. I only tolerated 3 treatments the first time 3 years ago, and had to stop, and 2 this last time. Just too painful! I did feel better both times than I had before the treatments, but this didn't last at all. I just don't see it as an option for me.

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