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Xiaflex
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12/10/12 05:14
FLNative 
12/10/12 05:14
FLNative 
Re: Xiaflex

AmyD:
I appreciate you posting about your experience. I am having a lot of pain with Ledderhose and it is good to read what is working or not for others as I try to go forward and take some action.

It's now three weeks since injection--the pain that I was experiencing from the injection has subsided, as has the bruising. I don't think the nodule has gotten smaller, but perhaps it has "soften" just a bit. I am hopeful to gain a benefit from the injection.

As a side note, I am going in tomorrow for my first radiation treatment on my hand. I'm happy to report back on this as well. This Dup and Led are nasty diseases! My best to all on the forum.

FLNative

12/10/12 12:22
wach 

Administrator

12/10/12 12:22
wach 

Administrator

Re: Xiaflex

Just curious: as you are having RT of your hand, did you also consider RT for Ledderhose?

Wolfgang

FLNative:
It's now three weeks since injection--the pain that I was experiencing from the injection has subsided, as has the bruising. I don't think the nodule has gotten smaller, but perhaps it has "soften" just a bit. I am hopeful to gain a benefit from the injection.

As a side note, I am going in tomorrow for my first radiation treatment on my hand. I'm happy to report back on this as well. This Dup and Led are nasty diseases! My best to all on the forum.

FLNative

12/14/12 02:46
FLNative 
12/14/12 02:46
FLNative 
Re: Xiaflex

FLNative:
AmyD:
I appreciate you posting about your experience. I am having a lot of pain with Ledderhose and it is good to read what is working or not for others as I try to go forward and take some action.

It's now three weeks since injection--the pain that I was experiencing from the injection has subsided, as has the bruising. I don't think the nodule has gotten smaller, but perhaps it has "soften" just a bit. I am hopeful to gain a benefit from the injection.

As a side note, I am going in tomorrow for my first radiation treatment on my hand. I'm happy to report back on this as well. This Dup and Led are nasty diseases! My best to all on the forum.

FLNative

Wolfgang,

Yes, the RT is for both hands. I went Monday to have the "plates" made/fitted. They want to do RT for 5 straight days so will start that this Monday. And yes, I will look into having to the feet after this.

Now, for the Xaiflex injection update--the nodual has "flattened" out a bit, if that makes sense. It was more round before. I think I am a little encouraged at this point. I will keep updating. I wish everyone well!!
FLNative

12/19/12 20:34
thecorny1 
12/19/12 20:34
thecorny1 
Re: Xiaflex

If you look on the Xiaflex website, they give particulars. It is used to breakdown the cord causing the fingers to bend. However, I'm not sure it works on nodules. I have two large nodules which have been ripening on my arch for the last 25 years. I've tried cortisone injections into the nodules. Hasn't worked. I'm now going to try Verapamil. Sounds likes that hit or miss. Hate to have the surgery.

12/20/12 10:14
wach 

Administrator

12/20/12 10:14
wach 

Administrator

Re: Xiaflex

Personally I would avoid surgery if possible. You find an overview of treatment options on http://www.dupuytren-online.info/ledderhose_therapies.html. The Xiaflex injection described in this thread is an interesting off-label use. Xiaflex is not approved for Ledderhose and to my knowledge there are no trials regarding application for Ledderhose. Xiaflex is aiming at distinct cords, not at nodules.

Wolfgang

thecorny1:
If you look on the Xiaflex website, they give particulars. It is used to breakdown the cord causing the fingers to bend. However, I'm not sure it works on nodules. I have two large nodules which have been ripening on my arch for the last 25 years. I've tried cortisone injections into the nodules. Hasn't worked. I'm now going to try Verapamil. Sounds likes that hit or miss. Hate to have the surgery.


Edited 12/20/12 10:15

12/22/12 06:29
FLNative 
12/22/12 06:29
FLNative 
Re: Xiaflex

wach:
Personally I would avoid surgery if possible. You find an overview of treatment options on http://www.dupuytren-online.info/ledderhose_therapies.html. The Xiaflex injection described in this thread is an interesting off-label use. Xiaflex is not approved for Ledderhose and to my knowledge there are no trials regarding application for Ledderhose. Xiaflex is aiming at distinct cords, not at nodules.

Wolfgang
thecorny1:
If you look on the Xiaflex website, they give particulars. It is used to breakdown the cord causing the fingers to bend. However, I'm not sure it works on nodules. I have two large nodules which have been ripening on my arch for the last 25 years. I've tried cortisone injections into the nodules. Hasn't worked. I'm now going to try Verapamil. Sounds likes that hit or miss. Hate to have the surgery.


Wach,

I agree that Xiaflex is intended to work on the cords; I just thought it was worth a shot (no pun intended) to see if it would reduce the nodule. The ortho who did the injection said he has seen it work in Dup's nodules. I think the size has shrunk a little but I will keep monitoring it.

I completed RT treatment on both hands today. I went every day this week and they want me to come back in early Feb to evalutate. We will also discuss at that time my feet. I hope it works on my hands and then on to the feet. I'll keep everyone posted.

To the earlier post about surgery--having had 3 surgies for LD, I would avoid it at all costs!!

My best,
FLNative

01/23/13 22:13
FLNative 
01/23/13 22:13
FLNative 
Re: Xiaflex

FLNative:
wach:
Personally I would avoid surgery if possible. You find an overview of treatment options on http://www.dupuytren-online.info/ledderhose_therapies.html. The Xiaflex injection described in this thread is an interesting off-label use. Xiaflex is not approved for Ledderhose and to my knowledge there are no trials regarding application for Ledderhose. Xiaflex is aiming at distinct cords, not at nodules.

Wolfgang
thecorny1:
If you look on the Xiaflex website, they give particulars. It is used to breakdown the cord causing the fingers to bend. However, I'm not sure it works on nodules. I have two large nodules which have been ripening on my arch for the last 25 years. I've tried cortisone injections into the nodules. Hasn't worked. I'm now going to try Verapamil. Sounds likes that hit or miss. Hate to have the surgery.


Wach,

I agree that Xiaflex is intended to work on the cords; I just thought it was worth a shot (no pun intended) to see if it would reduce the nodule. The ortho who did the injection said he has seen it work in Dup's nodules. I think the size has shrunk a little but I will keep monitoring it.

I completed RT treatment on both hands today. I went every day this week and they want me to come back in early Feb to evalutate. We will also discuss at that time my feet. I hope it works on my hands and then on to the feet. I'll keep everyone posted.

To the earlier post about surgery--having had 3 surgies for LD, I would avoid it at all costs!!

My best,
FLNative


Update on Xiaflex injection into my foot--the nodule has continued to shrink. Flatten out would be more descriptive. I am hoping that continues.

I did 5 straight days of radiation on both hands, which was completed before Christmas. I go back in two weeks to be evaluated. I have not noticed any reduction in size and no side affects.

Best to all,

FLNative

02/24/13 13:48
fjellver 
02/24/13 13:48
fjellver 
Re: Xiaflex

Dear FLNative,

How are you responding to your treatments?

I was wondering if you could tell me the name and location of the Doctor who injected Xiaflex into your LD nodule.?
It would be nice to know his/her formula.

Thanks,
Fjellver

03/05/13 14:01
AmyD 
03/05/13 14:01
AmyD 
Re: Xiaflex

Hi FlNative,

I am also wondering how you are doing? I was leaning toward Radiation but am now thinking that I should try Xiaflex partially because the LD I have seems very cord-ish. Love the idea of going to Paris (not sure financially I could pull that off but it is fun to dream) but we might be in Florida this summer and maybe there is somewhere there that would be good to try the shots?

Also to anyone out there, do you have ankle pain with this? The bottom of my feet hurt but when I am not on my feet I am amazed by my ankle pain and was that reduced with any treatment that you had?

03/05/13 15:42
wach 

Administrator

03/05/13 15:42
wach 

Administrator

Re: Xiaflex

Xiaflex in Paris? Why would you do that (except for seeing Paris, of course)?

Wolfgang

AmyD:
Hi FlNative,

I am also wondering how you are doing? I was leaning toward Radiation but am now thinking that I should try Xiaflex partially because the LD I have seems very cord-ish. Love the idea of going to Paris (not sure financially I could pull that off but it is fun to dream) but we might be in Florida this summer and maybe there is somewhere there that would be good to try the shots?

Also to anyone out there, do you have ankle pain with this? The bottom of my feet hurt but when I am not on my feet I am amazed by my ankle pain and was that reduced with any treatment that you had?

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dupuytren-online   nodules   Xiaflex   radiation   FLNative   injection--the   injection   surgery   surgery--having   swelling   actually   continue   Ledderhose   interested   treatment   insurance-doctor   experience   observations   injected   Wolfgang