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Personal experience
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10/26/2012 11:48
mobaygirl 
10/26/2012 11:48
mobaygirl 
Re: Personal experience

Thank you everyone. I am so excited at having found this new Doctor. I no longer feel defeated but quite hopeful. The injections he gave me should show some improvement in 2 months. At that time he will reassess me and decide if I need another round of injections. He wants to keep a close watch on the progression of my DD/DC and if it becomes necessary then he will perform NA. He said he NEVER wants it to get to the level where he would have to perform open hand surgery. He wants to avoid that at all costs.

    10/26/2012 18:46
    moondanc 
    10/26/2012 18:46
    moondanc 
    Re: Personal experience

    mobaygirl:
    Thank you everyone. I am so excited at having found this new Doctor. I no longer feel defeated but quite hopeful. The injections he gave me should show some improvement in 2 months. At that time he will reassess me and decide if I need another round of injections. He wants to keep a close watch on the progression of my DD/DC and if it becomes necessary then he will perform NA. He said he NEVER wants it to get to the level where he would have to perform open hand surgery. He wants to avoid that at all costs.

    I'm glad for your mobaygril. I'm quite curious what "injections" he gave you. The ONLY injections I'm aware of for DD are Kenalog (or steroid injections) which help "soften" the tissue and some think delay the disease and hopefully for you will lessen the pain!. Is this what you received? It's a totally different approach, though, than RT. However, some folks never have any progression beyond the lumps in their palms--hope you're in this category.

    http://www.dupuytren-online.info/dupuytren_steroids.html

      10/26/2012 19:56
      mobaygirl 
      10/26/2012 19:56
      mobaygirl 
      Re: Personal experience

      Moondanc, he used fluorinated methylprednisolone. This is different that the standard steroid injection and he said there were only about 20 Drs. that were using this type of injection and so far have had excellent results. Now that the pain of the injection itself has worn off I can say that the pain I was experiencing seems to be gone which pleases me no end. Now to see what happens in the next two months and decide where to go to from there.

      PS I was happy to hear that he was not a fan of Xiaflex.

      Edited 10/26/12 23:02

        10/27/2012 00:53
        moondanc 
        10/27/2012 00:53
        moondanc 
        Re: Personal experience

        mobaygirl:
        Moondanc, he used fluorinated methylprednisolone. This is different that the standard steroid injection and he said there were only about 20 Drs. that were using this type of injection and so far have had excellent results. Now that the pain of the injection itself has worn off I can say that the pain I was experiencing seems to be gone which pleases me no end. Now to see what happens in the next two months and decide where to go to from there.

        PS I was happy to hear that he was not a fan of Xiaflex.

        This is really interesting to me. I've always had standard steriod injections after NA-- to help with swelling and to "soften" hand lumps. However, I had never seen (or looked for!) a study that said steriod injections "lead to significant disease regression"-- they didn't with me but that's not to say they won't with my partner and they sure are cheaper than RT. Thanks for all your reports and info-- let us know how things are going!

        http://www.aafp.org/afp/2007/0701/p86.html

          10/27/2012 02:30
          cureall 
          10/27/2012 02:30
          cureall 
          Re: Personal experience

          are you saying that this injection would help dupuytrens and soften the cords and nodules? Would it be used for someone who hasn't had contractions?
          cureall

            10/27/2012 03:16
            mobaygirl 
            10/27/2012 03:16
            mobaygirl 
            Re: Personal experience

            cureall:
            are you saying that this injection would help dupuytrens and soften the cords and nodules? Would it be used for someone who hasn't had contractions?
            cureall

            cureall, I have slight contracture of my ring finger, nodules and just the start of a couple of cords. My Dr. who also has DD/DC has larger and more nodules, I believe he has also had surgery on one of his hands. This is the treatment he is currently having and feels that it is working well enough he is using on his patients that are like me in the early stage of the disease. It looked like from the study that moondanc posted the link to that he is not the only Doctor who believes that this treatment could be very beneficial to early stage Dupuytrens patients. That the effects that are being seen are the softening of nodules, my Dr. said from what he has currently seen it has little effect on defined cords.

            Am sorry this is such a long answer to a question that could be a yes or no answer but I did want to qualify my answer. According to my Dr. the main thing that makes this treatment different from the usual steroid injection treatment is the type of steroid being used and that it is fluorinated. I am no doctor so I have no idea what that all means. I do know I will have some idea of if it will be effective in about 2 months.

            Wishing you all the best for your quest to find the right treatment for you. I know that finding the right Doctor made all the difference for me.

              10/27/2012 09:51
              cureall 
              10/27/2012 09:51
              cureall 
              Re: Personal experience

              The use of 5-Fluorouracil has been found, in vitro, to cause a dose-dependent selective and specific decrease in collagen production by inhibition of fibroblast proliferation and myofibroblast differentiation [59]. The authors concluded that the clinical implication is that 5-fluorouracil could possibly reduce the recurrence of Dupuytren's disease in the hand.


              Does anyone have any information on 5-fluorouracil?
              cureall

                10/27/2012 11:57
                Seph 
                10/27/2012 11:57
                Seph 

                Re: Personal experience

                mobaygirl; i think you should be careful here. I am not a chemist but what I read about Fluorouracil would make me cautious. Wikipedia is not always reliable but worth a read in this case:

                http://en.wikipedia.org/wiki/Fluorouracil

                  10/27/2012 12:30
                  wach 

                  Administrator

                  10/27/2012 12:30
                  wach 

                  Administrator

                  Re: Personal experience

                  http://www.dupuytren-online.info/dupuytr...s_research.html

                  cureall:
                  The use of 5-Fluorouracil has been found, in vitro, to cause a dose-dependent selective and specific decrease in collagen production by inhibition of fibroblast proliferation and myofibroblast differentiation [59]. The authors concluded that the clinical implication is that 5-fluorouracil could possibly reduce the recurrence of Dupuytren's disease in the hand.


                  Does anyone have any information on 5-fluorouracil?
                  cureall

                    10/27/2012 13:32
                    mobaygirl 
                    10/27/2012 13:32
                    mobaygirl 
                    Re: Personal experience

                    Seph:
                    mobaygirl; i think you should be careful here. I am not a chemist but what I read about Fluorouracil would make me cautious. Wikipedia is not always reliable but worth a read in this case:

                    http://en.wikipedia.org/wiki/Fluorouracil

                    Seph thank you for the heads up,
                    Fluorouracil isn't the same drug as was used on me. Cureall is asking about the use of it. Being very new to all of this I have not even heard of this drug. What my new Dr. used on me is fluorinated methylprednisolone, a form of steroid.

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