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My condition continues - Perth WA
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07/08/2015 20:27
Stefan_K. 
07/08/2015 20:27
Stefan_K. 

Re: My condition continues - Perth WA

Read "cords" instead of "tendons" which we don't want to dissolve ;-)

07/08/2015 21:18
GaryBall 
07/08/2015 21:18
GaryBall 
Re: My condition continues - Perth WA

Cherise:
terrys:
Hi Geoff,

I am the patient Gazza has referred to, I had my LD injected on my left foot some 18 months ago and so successful I am having my right foot done in August. Haven't spoken to Gazza since the days after his injections but sounds as if its as positive as mine was.

Dr Chin has agreed to discuss his treatment with Dr Eaton (Charlie) from the Dups foundation, I am acting as a "messanger" but will provide Dr Eaton with Dr Chins details.

Good Luck for the future, Terry

Hi I got in this conversation later down the line not sure what the injections are you are referring to. The only injections approved in EU & the U.S. from many years of clinical trials is Xiaplex. Are there new injection other than Xiaplex approved?

Is the injection described above by any chance a enzyme called Xiaflex or Xiapex a bio drug? It's made in a sterile lab from soil enzymes or feces. Works very well on the tendons,,, not always for for nodes. The Xiaplex is in another clinical study in the U.S. for removing scar tissue. After surgery on my finger surgery left a huge amount of scar tissue. Scar tissue is made in the body from collagen the very same material formed in the body to form nodules on the tendons.

Collagenase clostridium histolyticum is an enzyme produced by the bacterium Clostridium histolyticum that dismantles collagen. It is used as a powder-and-solvent injection kit for the treatment of Dupuytren's contracture, a condition where the fingers bend towards the palm and cannot be fully straightened, and Peyronie's disease. BioSpecifics Technologies developed the preparation, which is manufactured and marketed by Auxilium Pharmaceuticals as Xiaflex in the US and by Sobi as Xiapex in Europe.
To learn more about the injections and side effects plz see the drug name online.

It worked for me my finger was at 180' now almost straight & eliminated all the scar tissue after many other treatments failed. All fourfingers show slight curvature . And LH in my feet we are at a wait and see at the moment. This is such a fickle disease.
Kind Regards,
Cherise

Hi Cherise...

I am pleased that you have had a positive outcome with Xiaflex.....

This particular treatment is not FDA approved....and has not undergone any independent studies....which leaves us flying blind into the hands of the Dr. Who has developed it....on the upside he happens to be a very highly regarded plastic surgeon who specialises in regenerative surgery....he has a patent on the treatment.....and I understand there are discussions with the dupuytrens foundation to sponsor a clinical trial...Tissue Plasminogen Activator is the prime active ingredient as I understand it......if you google Dr. David Chin patent you will find most of the information that you seek.....

I am keeping a diary of my experience with this treatment and will inform the forum how things are in about six weeks.....I had my injections for LD 3 weeks ago and in the very short term the treatment has been exceptional in my case....
Wishing you the best

Gazza

08/04/2015 09:10
l.hartley 
08/04/2015 09:10
l.hartley 
Re: My condition continues - Perth WA

Hello Oddjob. I am in hills on wat to Toojay. I have severe bilateral D. I had 1 operation on my little finger last year, to try it out. It was disastrous and made the problem worse. I now have Dupuytren with a causalgia around that finger from nerve damage, so have to wear a tight sleeve over my hand it to control the discomfort/pain.

08/04/2015 09:40
Stefan_K. 
08/04/2015 09:40
Stefan_K. 

Re: My condition continues - Perth WA

l.hartley:
I have severe bilateral D. I had 1 operation on my little finger last year, to try it out. It was disastrous and made the problem worse. I now have Dupuytren with a causalgia around that finger from nerve damage, so have to wear a tight sleeve over my hand it to control the discomfort/pain.

Sorry to hear what happened to you. Some surgeons should be locked up or at least have their license taken away or otherwise prevented from "practicing" on DD patients. Amazing how ignorant doctors can still be of treatment options in the age of the internet.

08/05/2015 01:20
Cherise 
08/05/2015 01:20
Cherise 

Re: My condition continues - Perth WA

l.hartley:
Hello Oddjob. I am in hills on wat to Toojay. I have severe bilateral D. I had 1 operation on my little finger last year, to try it out. It was disastrous and made the problem worse. I now have Dupuytren with a causalgia around that finger from nerve damage, so have to wear a tight sleeve over my hand it to control the discomfort/pain.

Hello,
That is the same thing happen to me after surgery. My pinky was shut tighter than a door on a gold mine. And caused all the other fingers to curl.

To make a long story short... I found out about Xiaflex a bio drug injection. The drug is an enzyme that desenigrates collagen and scar tissue from the surgery. Actually approved by the FDA for DD.

My finger is now open... Perhaps this is something you can look into.

Kind Regards.
Cherise

08/05/2015 11:26
Oddjob 
08/05/2015 11:26
Oddjob 
Re: My condition continues - Perth WA

Hello all,

Thankyou for the feedback, and my sympathy for the problems you all are experiencing. I too don't want to end up potentially being experimented on by hand surgeons no matter how well meaning. My logic tells me to try the less invasive procedures first, or leave things alone for as long as practically possible.

I count myself fortunate that my fingers aren't curling, and I have reasonably good dexterity to date.

I will enquire with Dr Chin in Brisbane. Turns out that my nephew is being married in Brisbane next year so I that could work well.

Keep positive.
Best regards

Geoff.

08/06/2015 04:59
Cherise 
08/06/2015 04:59
Cherise 

Re: My condition continues - Perth WA

Oddjob:
Hello all,

Thankyou for the feedback, and my sympathy for the problems you all are experiencing. I too don't want to end up potentially being experimented on by hand surgeons no matter how well meaning. My logic tells me to try the less invasive procedures first, or leave things alone for as long as practically possible.

I count myself fortunate that my fingers aren't curling, and I have reasonably good dexterity to date.

I will enquire with Dr Chin in Brisbane. Turns out that my nephew is being married in Brisbane next year so I that could work well.

Keep positive.
Best regards

Geoff.


According to what u described or the stage of your DD ......in my experience leave it alone.... Let it be. Anything can set it off especially treatments.

I would see your doc for a check up on the disease, but my guess is unless your are in serious pain and contracting fingers he will advise to wait. That is if the docs are worth their weight in salt.


kind Regards,
Cherise

09/19/2017 03:58
Miss_Running 
09/19/2017 03:58
Miss_Running 
Re: My condition continues - Perth WA

terrys:
Hi Geoff,

I am the patient Gazza has referred to, I had my LD injected on my left foot some 18 months ago and so successful I am having my right foot done in August. Haven't spoken to Gazza since the days after his injections but sounds as if its as positive as mine was.

Dr Chin has agreed to discuss his treatment with Dr Eaton (Charlie) from the Dups foundation, I am acting as a "messanger" but will provide Dr Eaton with Dr Chins details.

Good Luck for the future, Terry

Gary and Terry, I would dearly love an update on how you are both doing now, a couple of years on from your treatment with Dr. Chin

I am strongly considering seeing him and would really appreciate your feedback and if you are still happy. Thank you!

09/19/2017 04:19
terrys 
09/19/2017 04:19
terrys 
Re: My condition continues - Perth WA

Miss_Running:
terrys:
Hi Geoff,

I am the patient Gazza has referred to, I had my LD injected on my left foot some 18 months ago and so successful I am having my right foot done in August. Haven't spoken to Gazza since the days after his injections but sounds as if its as positive as mine was.

Dr Chin has agreed to discuss his treatment with Dr Eaton (Charlie) from the Dups foundation, I am acting as a "messanger" but will provide Dr Eaton with Dr Chins details.

Good Luck for the future, Terry

Gary and Terry, I would dearly love an update on how you are both doing now, a couple of years on from your treatment with Dr. Chin

I am strongly considering seeing him and would really appreciate your feedback and if you are still happy. Thank you!


Hi,

left foot is great, no return of the nodule, Right foot has a new nodule that is next to the old nodule which did not go away like it did on my left foot. Interestingly the original nodule on my right foot seems to be detached and not adherei ng to anything so it is quite plkiable and does not bother me. I am going back to dr. Chin sometime in the enxt 6 months or so to get reassessed, and Iw on't be afraid of another injection! Hope this helps. Terry

09/19/2017 05:04
Miss_Running 
09/19/2017 05:04
Miss_Running 
Re: My condition continues - Perth WA

That's wonderful news Terry, I'm very happy it has been such a success for you. Good luck with your next treatment and thank you for getting back to me. I will be sure to update this group after my treatment so that more people can be made aware of this.

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