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Xiaflex
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12/15/13 00:09
newman 
12/15/13 00:09
newman 

Re: Xiaflex

Hi everyone back in OZ for a while in the Sun. I'll just give my take. In 2007 I had RT by Prof . Seegenschmiedt in Germany on both feet. The nodule in the arch of the left foot has gone and the tendon has stretched giving me no further problem. I dispensed with the orthodics in 07 after having worn them for the previous 7 years. I do wear shoes with good soft inner soles. At the recent meeting of the Dupuytren Society in Munich Prof. Seegenschmiedt addressed the meeting which was made up of Surgeons and a few patients. I asked the question in relation to how young would he treat with RT. He told us of a young 10yr old male who had had surgery and the Ledderhose had regrown. He treated the youth who is now 19yrs of age with the Ledderhose in remission. The young man is now carrying out full sporting activity. Hope this helps.

Edited 12/15/13 00:11

01/28/14 22:54
FLNative 
01/28/14 22:54
FLNative 
Re: Xiaflex

Helena:
Dear FLNative,
I would very much like to know if you would recommend Xiaflex for a lump in the foot after your experience. I am asking because I have a friend waiting exactly for that operation. The doctor has tried a few times with Dupuytren lumps and saw good results, but this will be the first time to try with LD. My friend is quite young yet and the lump is not big but it bothers him when practicing sports, so he decided to try Xiaflex. Any thoughts will be apreciated!

Hi Helena,

The nodule on my foot that was shot with Xiaflex is just about gone. It causes me very little pain, and then not frequently.

01/29/14 06:57
GaryBall 
01/29/14 06:57
GaryBall 
Re: Xiaflex

How long ago since the procedure?.....

Thanks

Gazza

Edited 01/29/14 06:58

01/29/14 07:06
Tamarakruse 
01/29/14 07:06
Tamarakruse 
Re: Xiaflex

Very good news with the foot, does anyone know how to find doctors experienced with this?

Tamara

01/30/14 05:33
FLNative 
01/30/14 05:33
FLNative 
Re: Xiaflex

I received an injection of Xiaflex in the nodule on my foot in November of 2012. It is considered off label usage but the doctor, thankfully, was willing to try.

01/30/14 09:15
GaryBall 
01/30/14 09:15
GaryBall 
Re: Xiaflex

Really pleased it has worked for you..... Thanks for keeping us in the loop.....

Gazza

01/31/14 04:27
pricklerII 
01/31/14 04:27
pricklerII 
Re: Xiaflex

FLNative:
fjellver:
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


Dear Fjellver and Amy D and anyone else interested,

I am through with all radiation treatments--I did two rounds are on my hands and feet (each separated by 6 weeks) and I have not noticed any improvement yet.

I think the nodule in my foot that the Xiaflex was injected into has shrunk and flattened a bit. It also seems a little harder and less painful. The doctor who injected is a hand doc and it was his first time trying it after I told him I would be willing to try it. I do not feel comfortable at this point sharing his name as I am not sure he wants it out there. And, I am sure he has not done it since.

Best to all!


You had a Xiaflex injection and then 2 rounds of RT on the feet? My only concern is that with dual therapies we don't know how Xiaflex responds by itself. Perhaps the RT is what really helped with the PF. Maybe I'm missing something. Just my 2 cents.

Either way thanks for the updates!!

02/13/14 22:32
FLNative 
02/13/14 22:32
FLNative 
Re: Xiaflex

Prickler,

You raise a valid point. I tend to believe it's the Xiaflex b/c the nodule was shrinking before RT. RT was performed a year after the injection. Also, I've had RT on both feet and hands and no shrinkage; except for the Xiaflex injection on the foot.

FLNative

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