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URO wants to try DMSO....have had "resuce" instills......???

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  • URO wants to try DMSO....have had "resuce" instills......???

    My URO phoned me today...yep the doc called me not his RN.:woohoo:

    He truly wants me to do the Hydro....but I can't afford to do that at this time, so he says that he has been doing some research and says that he has never done instills in the office but that he has always wanted to. So what better why to start then with me. Boy that made me feel special.

    Ok here is the MILLION dollar question....I had 2 instill "resuce" treatments by another doc when I was first DX. I had the PST done first then they gave me the "rescue" med since I had the reaction. Went in the following week and had another one done.

    So I'm not sure if I should try this once again. On one hand I did not do it for the full 6 weeks, this was because the doc office said it was going to fall under my out of pocket and that I had to pay "my acct" up which was 600 + dollars before they would see me for a third time. Well 3 months later...my ins paid the hole thing except 50.00 total. :woohoo:

    Now for the other hand....

    I asked the doc if he thought it was worth it and he said you don't know till you try. I agree with that, but at the same time....to me it wasn't worth it .....I had a UTI after the 1st one and the second one my uretha hurt for ever it seemed.

    I'm just not sure what to do.....any advise or commets or experiences would be most welcomed. Thanks in advance
    Live your life to YOUR best, and Love to YOUR best!!!



    DX in 03 with Shingles
    Removal of Left ovary due to Cyst in 2005,
    I have had cyst since I started my period as a child age 12
    Hysterecotmy December 06
    IC DX March 07 by PST
    2 "rescue" instills in March 07
    Cyco May 07 confirmed IC
    Uro study June 07
    1st Pain Block July 17,08
    Hydro/Cysto Nov 11, 2008
    12-11-08 was told I had alot of inflamation

    Meds: Allergic to 6 things
    Premarin......taking the gen cause I get it at Walmart for 4$$
    Presique for my drepression :woohoo:
    Abilify for my depression
    Adderall ...found out I'm ADD...makes sense now
    Kolopin for anxiety
    Noroco for my pain
    Valtrex for my shingles as needed

    Sorry if my spelling is off on the meds [/FONT]


    http://community.webshots.com/user/s...host=community

  • #2
    So does he want to do DMSO or rescue instills? They are different. My uro just started the DMOS last week for me. I'm not sure how I feel about it yet, it makes me feel pretty crappy after I have it done.
    I did find a post on here under this section that talks about how anything more than 25% solution has shown to have the possibility of causing permanant damage to the bladder muscle. My uro's office usually does 50% DMSO but I insisted on doing 25% today and he was okay with that they just diluted it with sterile water.
    I obviously just started it myself but if you're thinking about it I'll answer any questions for you if I can. PM me if you want.
    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


    • #3
      Sorry to confuse...the doc wants to do the DMSO.

      But I have had the "rescue" treatments done.

      I just don't know if it is going to help. I also read that one. Thanks so much.

      I'm in so much pain it is crazy but I want to get better, I just don't want my pain to inteseify
      Live your life to YOUR best, and Love to YOUR best!!!



      DX in 03 with Shingles
      Removal of Left ovary due to Cyst in 2005,
      I have had cyst since I started my period as a child age 12
      Hysterecotmy December 06
      IC DX March 07 by PST
      2 "rescue" instills in March 07
      Cyco May 07 confirmed IC
      Uro study June 07
      1st Pain Block July 17,08
      Hydro/Cysto Nov 11, 2008
      12-11-08 was told I had alot of inflamation

      Meds: Allergic to 6 things
      Premarin......taking the gen cause I get it at Walmart for 4$$
      Presique for my drepression :woohoo:
      Abilify for my depression
      Adderall ...found out I'm ADD...makes sense now
      Kolopin for anxiety
      Noroco for my pain
      Valtrex for my shingles as needed

      Sorry if my spelling is off on the meds [/FONT]


      http://community.webshots.com/user/s...host=community

      Comment


      • #4
        They did not work for me in fact they made me feel much worse......but I have heard that they have helped others. Maybe you could try a couple of them and see what happens? I did four treatments and did not finish out the other two. I have also had the rescue treatments. Whatever you choose to do I hope it works out for 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

        Comment


        • #5
          Thank you so much.....I'm just not really sure what to do.

          I know that I don't want to be in pain!!! I'm going to sleep on it, my great grandfather used to always tell me never make a major decision with out sleeping on it.

          So I guess that's what I'm going to do.
          Live your life to YOUR best, and Love to YOUR best!!!



          DX in 03 with Shingles
          Removal of Left ovary due to Cyst in 2005,
          I have had cyst since I started my period as a child age 12
          Hysterecotmy December 06
          IC DX March 07 by PST
          2 "rescue" instills in March 07
          Cyco May 07 confirmed IC
          Uro study June 07
          1st Pain Block July 17,08
          Hydro/Cysto Nov 11, 2008
          12-11-08 was told I had alot of inflamation

          Meds: Allergic to 6 things
          Premarin......taking the gen cause I get it at Walmart for 4$$
          Presique for my drepression :woohoo:
          Abilify for my depression
          Adderall ...found out I'm ADD...makes sense now
          Kolopin for anxiety
          Noroco for my pain
          Valtrex for my shingles as needed

          Sorry if my spelling is off on the meds [/FONT]


          http://community.webshots.com/user/s...host=community

          Comment


          • #6
            DMSO helped me for several years. When I first started, the first few treatments were extremely painful for several days. In fact, I was ready to say "no more!" when one night I went to bed and slept all night for the first time in many years. That was enough to convince me to continue. By the time I completed the initial eight weekly treatments, I was only uncomfortable for the day of the treatment and then I felt better. I had monthly treatments for several years before they stopped helping.

            You will want to be sure the solution is 25% or less DMSO to avoid muscle weakening over time.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              I have had about 3 sets of DMSO treatments done, one was back in 1992 and yes, the first few times it did hurt, but like, all of a sudden, one night I slept thru the night. Even put me in remission for about 5 years, with just taking Elmiron. Good luck in your decision.

              Comment


              • #8
                Back in the Late 70's I had the DMSO. It did not work for me either. It Made me smell like Garlic. It is supose to help Stretch the Bladder and Relieve the Pressure. But in my Case it did not work. It made my Hunners Ulcers worse.

                Good Luck. Just try it okay.

                Hugs
                DebbieD

                Comment

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