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Collagenase - where is it available?
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03/07/08 12:04
sven1419

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03/07/08 12:04
sven1419

not registered

Re: Collagenase - where is it available?

Quote:



This is great news, being from England originally, going home for this treatment would be a great option. Can you give more information on where this was available?


Hi JuliaH,
I regret to inform you that there was a limited number of people chosen to undergo the Collagenase trials here in England over the next 9 months and I was told by the surgeon carrying out my treatment that it would be about 2 years if the tests proved to be successfull before it became available in England.
Maybe it will be available earlier in USA.
Regards
Sven

03/07/08 13:13
sven1419

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03/07/08 13:13
sven1419

not registered

Re: Collagenase - where is it available?

Quote:



Hi Sven,

It just struck me that you mentioned treatment over a 9-month period. How often do you have to go and receive injections and did they explain why the 9 month treatment period?

With NA there is a single surgical session. With X-ray therapy there are two sets of week long treatments six months apart. So I am curious as to the number of visits one would need to make to a clinic to receive the injections as this could have a big impact on the overall cost involved.

Thanks,
Bruce


Hi Bruce,
Perhaps I have misled you when I said that the period of treatment was over 9 months when actually the
9 months period is the length of the study trials. The visits to the hospital for treatment depends on how many fingers require treatment also how many injections are required to complete same, as it can take up to a maximum of 3 collagenase injections for each infected finger with a 30 day period between each injection .
Fortunately I,m taking part in a research study here in England which is free, also I live quite close to the hospital and the fact that I,m retired make it very easy for the frequent visits I will have to make.
Also I feel privilaged to be taking part in this programme as I believe it will be at least 2 years if the tests are a success before the treatment will be available in England.
regards
Sven

03/07/08 19:32
bstenman 
03/07/08 19:32
bstenman 
Re: Collagenase - where is it available?

Sven,

Thanks for the clarification. Having to make 3 visits over a 90 day period would make it expensive to travel any distance and this travel and lodging expense is not covered by medical insurance (as was the case with my trip to Essen for XRT).

With a NA procedure one is in and back out of a doctor's office in about an hour and there is a single visit so this will be a significantly less expensive treatment for most people even after collagenase is available outside of the clinical trials. In the USA especially, this will be a consideration as travel options are more limited and more expensive than in Europe. People have expressed a reluctance to travel 300 miles for a NA and I wonder how they would view making the trip 3 times for multiple collagenase treatments.

Has anyone mentioned whether they will be doing followups at yearly intervals to check the rate at which the disease reasserts itself?

03/08/08 10:12
Wolfgang

not registered

03/08/08 10:12
Wolfgang

not registered

Re: Collagenase - where is it available?

Bruce, I was told that the clinics participating in the trial only accept patients that live close by because of those frequent visits. But the many visits are required only for the trial, they need to track in detail what is going on. Once collagenase has been approved it will probably only take a couple of visits, one for injection and another one for breaking the cord. I would think collagenase needs some time to eat into the cord, so they won't be able to do it on a single visit. That's the downside compared to NA, the upside is that the treatment can probably done by someone closer to you.

Wolfgang

12/03/08 10:58
andy

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12/03/08 10:58
andy

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Re: Collagenase - where is it available?

Hi Dupuytrens and surgery have destroyed my younger brothers hands and feet most of his fingers have been removed, my older brother has severely contracted fingers and is blindly going down that same path. About a year ago my right hand started to contract theres no way im going to surgery I noticed the last post was quite a long time ago, im hoping there might have been some development with the collagenase treatment here in Australia is there anyone out there with any news in this regard ? Andy

03/12/09 00:40
LoveJohn

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03/12/09 00:40
LoveJohn

not registered

Re: Collagenase - where is it available?

When "googling" collengenese I found a manufacturer in New Jersey: Worthington Biochemical Corp., that supply various quantities to researchers in various potencies and not to Drs or us.

06/22/09 20:27
Rock Creek

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06/22/09 20:27
Rock Creek

not registered

Re: Collagenase - where is it available?

I was part of a test group with enzyme injections. The swelling was terrible in all the nearbuy tissue. My joint next to the injection sight is now hurting due to cartiledge damage due to swelling. To me surgery is the best option now that I have experience of both treatments! The pain when rupturing the node I about had a heart attack no pain relief was done prior to the Doctor doing the breaking down of the tissue! Just do your homework on what is right for you! Rock Creek

06/22/09 20:48
Randy_H 

Moderator

06/22/09 20:48
Randy_H 

Moderator

Old Dogs and New Tricks

Rock Creek,

Unfortunately Open Surgery can do the same thing to you hand. Though a rare case, many of the joints of my surgically treated hand are permanent swollen as well. Fortunately for me my other hand was treated with NA. There is no trace whatsoever from this procedure other than my finger being straightened. In fact, the former head of the American Society for Surgery of the Hand recommended that I forever avoid OS and stick with NA. He should know. He did the Open Surgery and then I made sure that he inspected my NA hand before *and* after my procedure. Yep, I paid him the $100 for *two* otherwise unnecessary appointments so he could have the benefit of seeing the effectiveness of NA with his own eyes.

In spite of this he's still on the fence regarding NA, except of course form me. I think it's something about Old Dogs and New Tricks that's got the better of him.

All that to say, you have a third option.

06/28/09 19:57
Dana

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06/28/09 19:57
Dana

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Re: Collagenase - where is it available?

Quote:



I'm very interested in pursuing the collagenase therapy. Does anyone know how to get into the clinical trial, or if this treatment is available outside the US?



I have been using the topical lotions Santyl, which is a petroleum based version of same, along with DMSO to help it adsorb into my bloodstream and nodes faster.. I saw dramatic improvement in mobility and size with in a week, and am now in to my 3rd week. I highly recommend this as an option to waiting for the FAA to approve the injections.

06/29/09 01:04
KatherineG 
06/29/09 01:04
KatherineG 
Re: Collagenase - where is it available?

Dana, where do you buy Santyl?

Thanks KatherineG

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injections   Patients   clinical   treatment   surgery   Xiaflex   Collagenase   Dupuytren   1212&highlight=   Contracture   Pharmaceuticals   available   Collegenase   participants   injection   interphalangeal   double-blind   placebo-controlled   metacarpophalangeal   fingers