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06/26/2013 01:03
pia2some 
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06/26/2013 01:03
pia2some
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Picture and question
I thought I read a post on here about someone who had a finger that was hyperflexed (not sure if that is even the correct word). I'm wondering if that is what is going on with my ring finger on the left hand. My left hand doesn't have much contraction yet, but lots of nodules, cords and is getting worse on a steady basis. The ring finger is being pulled in at the base (MP joint), but look how it is also bending backwards. Weird.
~ dawn
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06/26/2013 01:06
pia2some
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06/26/2013 01:06
pia2some
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Re: Picture and question
While I'm at it .... my right hand is getting bad. That middle finger has really really pulled sideways so that it is now under my ringer finger, which is contracted. The pinky is also contracted at 40 degrees. There are cords going up the side of my middle finger and causing it to pull sideways. It hasn't bothered me until recently. Now it's pulling so tightly to the side that it's interfering with using my hand.
~ dawn
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06/26/2013 02:40
Rocket88 
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06/26/2013 02:40
Rocket88
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Re: Picture and question
I am sorry that you have it. Many of us have it too. Me, both hands and feet. I really hate this disease - it hurts, it pulls, and it seems like there is nothing we can do about it!
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06/26/2013 16:43
pixi 
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06/26/2013 16:43
pixi
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Re: Picture and question
I'm so sorry to hear you're suffering, too.
I assume you're seeing a good doctor?
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06/30/2013 02:34
pia2some
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06/30/2013 02:34
pia2some
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Re: Picture and question
pixi:
I'm so sorry to hear you're suffering, too.
I assume you're seeing a good doctor?
I do. I located a doctor in the metro Atlanta area who was trained by Dr. Eaton. Dr. Kirkpatrick is monitoring my hands every few months and will do NA soon. I've had Xiaflex with another doctor but I won't be doing that again.
~ dawn
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06/30/2013 14:24
LubaM.
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06/30/2013 14:24
LubaM.
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Re: Picture and question
pia2some:
I do. I located a doctor in the metro Atlanta area who was trained by Dr. Eaton. Dr. Kirkpatrick is monitoring my hands every few months and will do NA soon. I've had Xiaflex with another doctor but I won't be doing that again.
~ dawn
Dawn, sorry about all your problems. Can you please tell us why you won't have Xiaflex again. Good luck with the NA you will have soon.
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07/01/2013 01:50
pia2some
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07/01/2013 01:50
pia2some
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Re: Picture and question
LubaM.:
pia2some:
I do. I located a doctor in the metro Atlanta area who was trained by Dr. Eaton. Dr. Kirkpatrick is monitoring my hands every few months and will do NA soon. I've had Xiaflex with another doctor but I won't be doing that again.
~ dawn
Dawn, sorry about all your problems. Can you please tell us why you won't have Xiaflex again. Good luck with the NA you will have soon.
Several reasons, Luba. At the time I had Xiaflex (about a year ago), I could not find anyone in the Atlanta are who did NA. Everyone was doing Xiaflex. My right ringer finger was bad and I needed to do something. My greatest hesitation with Xiaflex was that I was putting a foreign substance in my body and no one really has any long term data on what might happen. But without any other options, I decided to try it. The cost was just ridiculous but it did work. For about nine months. Now that finger is contracting again. I do realize that that is not uncommon.
Second reason is that I did not have too many problems in that right hand except for that ring finger. I had several nodules but that was the only major cord. Within a few months, the right hand got ten times worse and the left hand, which had no problems, developed nodules, cords and contractures. Six months after Xiaflex, both hands were in horrible shape. That could be a coincidence but it seems unlikely. Between the cost, the lack of long term data and the rapid worsening of the disease, I probably won't go with Xiaflex again.
I have no found a wonderful doctor who does NA and was trained by Dr. Eaton. She feels confident that she can successfully treat a lot of my hands with NA. We're just holding off a bit longer. Since I have an option now, I'd much rather do NA over Xiaflex. The cost difference is huge and that is a big factor for me.
~ dawn
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07/01/2013 02:56
LubaM.
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07/01/2013 02:56
LubaM.
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Re: Picture and question
Dawn, totally understand your reasons for not repeating Xiaflex. I am not ready to use it, mainly because I am waiting for more data on long term results, and also because I have read on this forum and have met people who have had very bad reactions to Xiaflex. I will stick with NA for now, even though my first two NA's re-occurred within six months. It is too soon to tell about the latest NA done six weeks ago.
I have also done Radiation Therapy (RT) for my Ledderhose (in left foot) and Dupuytrens (left hand palm) when it was at an early stage with active nodules. It stopped the progression of DD for three years, but then the small finger began to contract which led to my decision to do the third NA six weeks ago... In my foot the RT shrunk the two hard marble size nodules, they are 90 % gone.
When it comes to Dupuytrens, no treatment is perfect...so far... for me RT worked (partially)...
Edited 07/01/13 06:03
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07/01/2013 03:15
pia2some
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07/01/2013 03:15
pia2some
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Re: Picture and question
When you compare the cost of NA and Xiaflex and the data on it recurring, it just makes more sense to go with NA. If I had no options for NA then I would consider Xiaflex, which is what I did last year. Also, Xiaflex was excruciatingly painful for me. My arm was purple up to my armpit. Every lymph node in that arm swelled up and was painful to touch for two weeks. It'd be worth it if it had actually worked. lol.
We're holding off on NA right now because my body creates awful scar tissue. Every major surgery I've had resulted in additional surgery to deal with scar tissue. My doctor is a bit concerned that even NA might produce too much scarring and possibly limit future options for NA. Since I can still use my hands for the most part, we're waiting and watching. I just turned 50 so I still have quite a few years left of needing my hands, or so I hope. :)
I wish you had better success with NA. That must be very frustrating. I'm sorry.
~ dawn
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