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Auxilium AA4500 Trials Report.
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01/16/2008 03:11
bshatzer 
01/16/2008 03:11
bshatzer 
Re: Auxilium AA4500 Trials Report.

I had the third and final injections yesterday and the final "procedure" today.

The straightening procedure was done this time under a local anesthetic. MUCH better! Lots of pressure, some discomfort, but minimal pain. Apparently the protocol has been altered to allow the use of the anesthetic - as my doctor opined, "We're still all learning on this, doctors included."

The cord didn't snap but the doctor pronounced himself well satisfied anyway - he said he thinks the cord has just dissolved.

It's tough to tell right now whether or it's as great a success as he thinks. The finger is more or less straight on the bottom -if- you manually straighten it - without the manipulation, it remains slightly contracted. On top, the knuckle is roughly the size of a small walnut (and the color of a grape) so its really tough to tell what the angle on top will be once the swelling goes down.

But, whatever the ultimate result, it's clearly better than where I started. If only they'd been using the local anesthetic from the beginning!

Revisit is scheduled for next week. By then the swelling should have subsided and a more accurate appraisal of just where I am should be possible. A report will follow in due course.

01/16/2008 04:31
wach 

Administrator

01/16/2008 04:31
wach 

Administrator

Re: Auxilium AA4500 Trials Report.

To bshatzer: Glad that it finally worked out well for you and with less pain! Wearing a night splint for several months might eventually still improve your results.

Good luck!
Wolfgang

Quote:



... The finger is more or less straight on the bottom -if- you manually straighten it - without the manipulation, it remains slightly contracted. On top, the knuckle is roughly the size of a small walnut (and the color of a grape) so its really tough to tell what the angle on top will be once the swelling goes down.

...


01/22/2008 03:04
bshatzer 
01/22/2008 03:04
bshatzer 
Re: Auxilium AA4500 Trials Report.

Last report unless something changes significantly.

Seven day follow-up today - the darn finger is still bent. While the improvement has been from about 60 degrees before the treatment to about 30 degrees now, it's still less than a "cure".

Still the improvement is significant and a lot better than when I started. I can live with the current contraction so long as it doesn't progress. If it does, dunno where we go - maybe NA because surgery seems like a poor solution and as likely to make things worse as better in the long run. We'll see how long the current "fix" lasts.

Be of good cheer and thanks for all the good wishes along the way.

01/23/2008 20:27
Randy_H 
01/23/2008 20:27
Randy_H 

Auxilium AA4500 Trials Report.

bshatzer,

Thanks for your report. It's obvious that Collegenase treatment is not yet as evolved as NA. Gland to hear that they finally realized that a local anesthetic is necessary.

For clarification, I believe you were referring to both the MCP (closest to the palm) and the PIP (next joint down the finger). Take a look at Eaton's site for the predicted correction for each:

See: http://www.handcenter.org/newfile25.htm near the bottom of the page.

Unfortunately going from a 60 degree PIP to a 30 degree is par for the course in all medical interventions, surgery included. Once the joint's tendons mussels and surrounding tissue in a PIP get bent and stay bent for a few years they just don't want to come back. The MCP on the other hand (or perhaps same hand :-) will come back much more easily.

The beauty of NA and Collegenase is that we can now do a correction on a PIP as soon as 20-25 degrees which will yield good resets. Surgery is not usually done until 45 degrees.

bshatzer, as yet there is no "cure" for our disease, only management through treatment. Until recently Open Surgery was our only option, and the medical establishment is unfortunately still *addicted* to that single solution. Thanks for being part of the effort to change that status quo.

01/24/2008 06:02
Wolfgang

not registered

01/24/2008 06:02
Wolfgang

not registered

Re: Auxilium AA4500 Trials Report.

bshatzer, just adding to Randy's comments: some patients reported further improvement, i.e. reduction of the extension deficit, by wearing a night splint for several months, in some cases up to half a year. I am mentioning this because some of those comments were in our German forum and maybe less known here. If the night splint is reasonably comfortable then maybe this is worth a try.

Wolfgang

01/24/2008 19:06
moondanc 
01/24/2008 19:06
moondanc 
Re: Auxilium AA4500 Trials Report.

In the Auxillium double blind trials one of the requirements is wearing the splint for 4 months. I wonder if the straight study drug trials require that. My study doc made an offhand remark one day about prior studies finding 2 months was the optimum time. I'm at about 6 weeks and every so often I forget to wear my night splint and I find it does make a difference. The splint (MCP joint) still seems to be helping although I suspect it's because I still have the skin tethering in my palm about 1/2 inch below my finger. My splint isn't that comfortable, rough edges and pretty primitive but I'm going to continue wearing it at least until my 90 day checkup.

01/24/2008 19:18
Randy_H 
01/24/2008 19:18
Randy_H 

Splints

moondance

I took my splint(s) and padded them with fabric, old wet suit material, etc., to be more comfortable. I wanted to crank them down and put as much pressure on the joint as I could and still sleep. You only have a few months to get the benefit of the splint so go for it.

01/24/2008 19:31
moondanc 
01/24/2008 19:31
moondanc 
Re: Auxilium AA4500 Trials Report.

Randy-- Thanks for your suggestions but the problem isn't the angle, it's the rough edges on the sides, where and how the velcro attaches, etc. It's a very crude splint, they just cut it out of a soft plastic material and then heated it to make it hard and slapped on some velcro. $15.00 drugstore splints for carpal tunnel are much less crude.

In the beginning I did try to pad the tip of the finger itself to get more extension but that cause over-extension and my finger got way to stiff. The hand therapist explained to me at the time that when I was doing manual stretching to push it back at the bottom of the finger and not at the top.

01/24/2008 20:45
tbro

not registered

01/24/2008 20:45
tbro

not registered

Re: Auxilium AA4500 Trials Report.


Result of Dupuytrens trial for me

I just had a set of injections at Stanford on Monday (12/3/07). On Thursday and I just picked up my guitar for the first time in almost a year - actually played some flamenco where I need to fan out my fingers to full extension. It felt weird to have that freedom of movement again, and so soon. I had three small injections at the base of my right ring finger on Monday afternoon. My hand swelled overnight and there was some discomfort that was dispelled with a couple of Tylenol tablets.
On Tuesday I drove back to Stanford and compared notes with other participants. It was patently obvious who had received the collagenase and who had the saline placebo. The double blind aspect is a joke.
When I was called in, the doctor took my finger and said she would make three tugs. (She told the same to the placebo group.) She only had to make one. There was pop that sounded like a loud popping of knuckles with no pain, and my finger extended pretty far. She felt that was all she needed to do. I then went to the therapist, who instructed me about stretching the hand and fitted me with a splint to wear at night.
Tuesday night was again uncomfortable but controllable with Tylenol, and on Wednesday I started to work on the stretching. My hand was swollen enough to limit the stretching, although it was better as the day progressed. One major improvement occurred when I felt a release while stretching,and the middle and ring fingers, which had been almost locked together, suddenly spread apart.
By Thursday the swelling was reduced, which allowed me to really stretch my hand. Dr. Henst, who heads the hand clinic at Stanford, told me that the collagenase would remain active for about 72 hours and that I should take advantage of that window to get the maximum benefit. He also said that I would probably experience some swelling in the lymph nodes during the active period. I did but it was hardly noticeable and was almost gone by 1 week, as was the swelling, which is allowing me to really hyperextend my hand. I will be going back for another set of injections on my left hand, which is not quite as badly affected, under an open label study in early March. So far, I am thrilled with the results.

01/25/2008 20:00
yankee21 
01/25/2008 20:00
yankee21 
Re: Auxilium AA4500 Trials Report.

Quote:




Result of Dupuytrens trial for me

I just had a set of injections at Stanford on Monday (12/3/07). On Thursday and I just picked up my guitar for the first time in almost a year - actually played some flamenco where I need to fan out my fingers to full extension. It felt weird to have that freedom of movement again, and so soon. I had three small injections at the base of my right ring finger on Monday afternoon. My hand swelled overnight and there was some discomfort that was dispelled with a couple of Tylenol tablets.
On Tuesday I drove back to Stanford and compared notes with other participants. It was patently obvious who had received the collagenase and who had the saline placebo. The double blind aspect is a joke.
When I was called in, the doctor took my finger and said she would make three tugs. (She told the same to the placebo group.) She only had to make one. There was pop that sounded like a loud popping of knuckles with no pain, and my finger extended pretty far. She felt that was all she needed to do. I then went to the therapist, who instructed me about stretching the hand and fitted me with a splint to wear at night.
Tuesday night was again uncomfortable but controllable with Tylenol, and on Wednesday I started to work on the stretching. My hand was swollen enough to limit the stretching, although it was better as the day progressed. One major improvement occurred when I felt a release while stretching,and the middle and ring fingers, which had been almost locked together, suddenly spread apart.
By Thursday the swelling was reduced, which allowed me to really stretch my hand. Dr. Henst, who heads the hand clinic at Stanford, told me that the collagenase would remain active for about 72 hours and that I should take advantage of that window to get the maximum benefit. He also said that I would probably experience some swelling in the lymph nodes during the active period. I did but it was hardly noticeable and was almost gone by 1 week, as was the swelling, which is allowing me to really hyperextend my hand. I will be going back for another set of injections on my left hand, which is not quite as badly affected, under an open label study in early March. So far, I am thrilled with the results.


.... Tbro--This is a very encouraging report......Can you tell us...what was the degree of contraction before the injection and what degree it is at now? And how much time it is between the injection and now ?

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