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Personal experience
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06/16/2013 19:33
Brian_PDX 
06/16/2013 19:33
Brian_PDX 
Re: Personal experience

Hi Diane,

As to the use of ultrasound, some doctors do and some don't use them with NA or Xiaflex treatment. I specifically asked the question of the doctor I went to and he said there are so many nerves and so many small nerves that are not detected by ultrasound that it is not really helpful. The Mayo people could use it to help define the cords being injected but if you can't clearly palpate a cord Xiaflex and NA are not recommended anyway. Having been involved in the medical industry let me be cynical and say doctors can be just as prone to selling services as any other profession. The Mayo people are quite professional however.

You should note that the injections should be multiple for each cord and done very slowly. I suggest not only a local anesthetic when you break the cords (or try) but also spraying a freezing solution on the area before injections. It helps with the pain. If you can palpate the cord a good doctor should be able to hit the cord and avoid nerves with or without an ultrasound. But, by all means, people should follow their own judgement and that of their doctor, have an utrasound and report back here.

As to the introduction of Xiaflex to Australia and New Zealand the best answer I could get from the Auxilium rep I talked to was "soon". He did confirm it was not available yet in those countries. Contacting, as suggested, the local distributors seems a great idea and I would suggest you have doctors inquire on your behalf as well. Doctors also have to go through a certification training and I am not sure of the timing of that process. Another tact would be to involve the government officials in your country similar to our FDA. This is best done here through elected officials like senators and congressmen and women. I am not sure about there but if the FDA approves something it is only after years of process and it should be easier in other countries. I don't think people should be allowed to suffer by a delayed bureaucratic process and I would certainly try NA and/or Xiaflex before a palmar fasciectomy. The PF should only be done by an experienced hand surgeon but I would not have a problem being a good doctor's first patient for NA or Xiaflex once they are certified.

Hope this info is helpful.

Brian

    06/16/2013 20:29
    moondanc 
    06/16/2013 20:29
    moondanc 
    Re: Personal experience

    Brian_PDX:
    Hi Diane,



    You should note that the injections should be multiple for each cord and done very slowly. I suggest not only a local anesthetic when you break the cords (or try) but also spraying a freezing solution on the area before injections. It helps with the pain. If you can palpate the cord a good doctor should be able to hit the cord and avoid nerves with or without an ultrasound.
    Brian

    Hi Brian,
    Thanks for your info. I've had DD for more than 20 years. I partcipated in the Stage 3 trials for Xiaflex in 2007 in one hand, one finger which at that time was the only cord I had and my disease had progressed very, very slowly for 20 years. Prior to Xiaflex I had NA in 2005 with Dr. Eaton. Once I had Xiaflex injection, my disease took off like wild fire and I now have it in both hands, all eight fingers. I also had NA in 2009 first with Dr. Denkler, one hand--contraction returned in several months-- and then again in 2009 with Dr. Eaton--both hands. In 2009 I had RT on both hands-- one hand before NA, the other immediately after--it did seem to help my palms. I had NA again with Dr. Eaton in 2011 both hands and am in the process of scheduling it again for the fall with Dr. Pess.

    I know way more than I want to about DD, Xiaflex and NA but I'm always looking for new information and methods..

    Diane

      06/21/2013 08:11
      Jaci

      not registered

      06/21/2013 08:11
      Jaci

      not registered

      Re: Personal experience

      Some interesting info I received today regarding Xiaflex for anyone interested. (A copy and paste of an email I received. I have ** the docs name for privacy reasons but am happy to disclose by PM if anyone wants to contact them)


      Thank you for your enquiry. Dr ** advised that he does not use Xiaflex as there is a high complication rate. Both Xiaflex and other injections do not work for Dupuytren’s disease in the fingers but only in the palm.
      Our 5 year follow up is very good. The Cost is $1,200.00 injection per hand. Substance is under patent and non disclosure at the moment.

      Food for thought

        06/22/2013 12:22
        wach 

        Administrator

        06/22/2013 12:22
        wach 

        Administrator

        Re: Personal experience

        Hi Jaci,

        the statement "Xiaflex and other injections do not work for Dupuytren's disease in the fingers but only in the palm" is possibly misleading. Of course, Xiaflex is effective for Dupuytren's in the fingers but results are on an average not as good as for the palm. Dupuytren's in the finger is usually resulting in contracture of the middle (PIP) joint. For PIP joints reduction of the extension deficit is typically less and recurrence is earlier. For more details you might refer to the literature on http://www.dupuytren-online.info/dupuytr...literature.html .

        What would be the "other injections" the doctor is referring to?

        Wolfgang

        Jaci:
        Some interesting info I received today regarding Xiaflex for anyone interested. (A copy and paste of an email I received. I have ** the docs name for privacy reasons but am happy to disclose by PM if anyone wants to contact them)


        Thank you for your enquiry. Dr ** advised that he does not use Xiaflex as there is a high complication rate. Both Xiaflex and other injections do not work for Dupuytren’s disease in the fingers but only in the palm.
        Our 5 year follow up is very good. The Cost is $1,200.00 injection per hand. Substance is under patent and non disclosure at the moment.

        Food for thought

          06/23/2013 01:47
          Jaci

          not registered

          06/23/2013 01:47
          Jaci

          not registered

          Re: Personal experience

          I wondered the same Wolfgang.

          I also wonder w hat treatment would be like if NA and Xiaflex were combined together - NA first to weaken the cord, and Xiaflex to dissolve the collagen afterwards. Liken it to a lump of ice - breaking it down first before pouring hot water over the top to dissolve is more effective that simply smashing up the ice, or just pouring hot water alone... Would also mean less Xiaflex required (and the smaller amount of drug into the body, the better, right)...

            06/23/2013 03:47
            brianprice 
            06/23/2013 03:47
            brianprice 
            Re: Personal experience

            Or the other way around - use Xiaflex to weaken the cord - but instead of breaking it with a physical manipulation - use NA.....

            Jaci:
            I wondered the same Wolfgang.

            I also wonder w hat treatment would be like if NA and Xiaflex were combined together - NA first to weaken the cord, and Xiaflex to dissolve the collagen afterwards. Liken it to a lump of ice - breaking it down first before pouring hot water over the top to dissolve is more effective that simply smashing up the ice, or just pouring hot water alone... Would also mean less Xiaflex required (and the smaller amount of drug into the body, the better, right)...

              06/23/2013 08:06
              wach 

              Administrator

              06/23/2013 08:06
              wach 

              Administrator

              Combining NA and Xiaflex

              I am not sure whether combining both techniques would improve the result. When doing NA first the danger might be that the cord is thinner and when Xiaflex is injected it might leak out of the cord and do damage elsewhere. Collagenase is not an enzyme that just affects Dupuytren's tissue, it might also e.g. damage joints or tendons. It's therefore important that after injection the enzyme remains confined within the cord. If the cord is pre-damaged by NA then this might be more difficult and thus dangerous.

              If you do Xiaflex first why not do the manipulation? I found the manipulation not very painful because my hand was numbed. There is one situation where I could imagine that the combination of both techniques might be useful: if Xiaflex did not damage the cord sufficiently that it can be broken afterwards, it might be easier and cheaper to finally break it with an additional NA.

              Wolfgang

                06/28/2013 10:01
                Trigger8 
                06/28/2013 10:01
                Trigger8 

                Re: Personal experience

                I am glad I have found this Site as I don't know anyone else with this condition. I have had eight, yes 8, trigger fingers and in the period of surgery and stitches coming out I have developed Dupuytren constricture? with each finger but not the thumbs. The nodule is a few centremetres below the finger just where the trigger finger scar ends and then from the nodule there is a hard line of tissue down the palm of my hand. I have 2 fingers that I can no longer fully straighten. My neurosurgeon diagnosed it but said he doesn't treat it and the hand surgeon says he can 't understand why I got it.He said if he operated it would come back. I am hoping to find someone who will treat it. I know of others who have had triggerfinger and interestingly have read that both conditions are common in Scandinavien countries. Maybe I have Viking ancestors!

                  06/28/2013 13:12
                  spanishbuddha 

                  Administrator

                  06/28/2013 13:12
                  spanishbuddha 

                  Administrator

                  Re: Personal experience

                  Trigger8:
                  I am glad I have found this Site as I don't know anyone else with this condition. I have had eight, yes 8, trigger fingers and in the period of surgery and stitches coming out I have developed Dupuytren constricture? with each finger but not the thumbs. The nodule is a few centremetres below the finger just where the trigger finger scar ends and then from the nodule there is a hard line of tissue down the palm of my hand. I have 2 fingers that I can no longer fully straighten. My neurosurgeon diagnosed it but said he doesn't treat it and the hand surgeon says he can 't understand why I got it.He said if he operated it would come back. I am hoping to find someone who will treat it. I know of others who have had triggerfinger and interestingly have read that both conditions are common in Scandinavien countries. Maybe I have Viking ancestors!
                  Welcome Trigger8

                  If you browse the forum you will find lots of users who experienced Dupuytren's after surgery, often for carpal tunnel but also further new cases of Dupuytren's after surgery for Dupuyren's!

                  The good news is there are some treatment options, the not so good news is it's complex choosing an option, and the bad news is there's no cure.

                  Take a look at the treatment choices from the tab at top of the website. If you have a cord(s) and contracture the main options are NA, Xiaflex, surgery. If you have nodules, cords, but no contracture the options are do nothing, radiotherapy if it's active, and possibly preventative measures.

                  Whatever intervention-al treatment you choose, the most important thing seems to be finding a doctor or surgeon with skill, experience and a good manner. The treatment tab also has some lists of doctors and surgeons by country. If one appropriate for you is not near or listed, just come back and ask.

                  SB

                    06/28/2013 18:34
                    Brian_PDX 
                    06/28/2013 18:34
                    Brian_PDX 
                    Re: Personal experience

                    We don't know where you live Trigger8 but you can find a list of doctors who are familiar with Dupuytren's Contracture (DC) also known as Dupuytren's Disease (DD) at www.xiaflex.com. The button on the lower left "Find a Doctor". They have also had Xiaflex treatment certification and many are hand surgeons. I am not advocating Xiaflex, that is between you and your doctor, but at least they will be familiar with the disease. Also try The Mayo Clinics site for info and doctors though there may not be a clinic near you.

                    How do they know you didn't have DC the whole time rather than develop it after surgery? If you have problems with insurance, as I did, the Xiaflex people have a section that helps with appeals should you choose Xiaflex. I go in to what will be my third hand surgeon on July 2nd. I suggest you look at all options and work from least to most invasive treatments.

                    Good luck,

                    Brian

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