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Auxilium AA4500 Phase 3 Clinical Trial Experience
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11/15/07 09:00
Randy_H 

Moderator

The AMA

That's my point in the USA. While NA "should" cost less, it will not for the reasons you stated. Our medical establishment is profit oriented, scientifically ridged, slow to change and highly protective and conservative compared to Europe. There are some plusses along with the negatives in my view.

As example of a negative, I'm now in remission for Chronic Fatigue / Fibro.. By change, fate or Divine Appointment I found the MD who had the condition himself and found the treatment that actually works. He is a UCLA associate professor so he not even on the fringe. However the one scientific trial to test his protocol did not show significance. As a result the medical establishment abandoned him. Still, I'm fixed. Go figure. The experiment must have been flawed because this is no placebo effect with me I can assure you.

But medical science is built upon repeatable experiments on proven hypothesis. Without that we devolve into Voodoo. That is the plus. Still, we are harsh on experimental unproven procedures and ideas. My experience with CF/Fibro and NA for Dups has taught me to mistrust the America medical establishment. The AMA is a political lobby after all.

(I mean no disrespect to Eaton/Denkler/Press/Kline Et All who I think are all great caring guys)

11/15/07 15:54
GPM 
Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

The injection itself isn't that painful. The worst part of it is they poke you two or three times to spread the stuff around a bit. The most painful part for me was the next day when the doctor tried to snap the cord. Perhaps you'll be one of those who has the cord spontaneously release before your return visit.

Now that I'm over two weeks beyond the injection, things continue to improve. The nodule on my ring finger is still there, but it is much less sensitive than it was before the injection. When I remove the splint in the morning, my fingers are completely straight. I can still feel most of the cord in my palm, but it doesn't seem to be nearly as pronounced as before. If anything it seems like enough of the cord has dissolved to release the contracture. I am also able to place my palm flat on the table, although there is just a bit of discomfort in doing so.

11/15/07 17:01
wach 

Administrator

Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

To GPM: your experience more or less matches NA. If you look at the example that we are showing on http://www.dupuytren-online.info/needle_aponeurotomy.html the originally quite pronounced nodule has flattened considerably.

Wolfgang

11/15/07 22:27
JAnnRunner 
Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

bshatzer,

I start on the study Monday the 19th as well and receiving my first injection ( well, after I get my bloodwork at 700am) Where are you participating in the study? I will be at Indiana hand center in Indianapolis..

11/15/07 23:07
bshatzer 
Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

To JAnnRunner.

I'm in portland, oregon so I fear we'll not meet. But, the best of luck to you. I hope it works as well for you as I'm hoping it will work for me.

11/16/07 00:08
JAnnRunner 
Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

Bshatzer,
Is your study a "blind" study or is it an open study?? I will also try to post next week after my injection . J Ann

11/19/07 22:24
JAnnRunner 
Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

I went in for what i thought was gonig to be my first injection of AA4500 this morning. That was not the case after being evaluated by hand therapist ( who said earlier I was a candidate) I was seen by the dr and he said I was not!! Wind out of my sail for sure!! He said the DC is attaching to my tendons ( spiraling) and not to my cords , it is deep in my fingers by the knuckle causing it the pull straight down not to the palm so to speak. He said if he did the injection he would blow -out my tendon and would not be able to be repaired. He said both the complications from this study ( tendon blow-out) was from people who had it like me. So I guess the only upside is that I did wait so therefore the blow-out was not me! ( not that i wish that on anyone) I just wish I had not got my hopes up again for a successful treatment. I had 2 failed surgeries, denied NA treatment and now this and I am not even 40 years old yet... The dr just said to keep up my exercise and stretching my joints and tendons and try to fight if off that way... Any other advise out there?? maybe radiation?? So far it has not been that bad this past year, just 45 degree in small pip and other tumors have not rteally started to contract..but I know what the future will hold...

11/20/07 06:20
newman 

Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

Australia Calling.Hi Jane .Keep up the stretching exercises. Check the lateral strength between the fingers . I was surprised the Oncologist held a single sheet of A4 paper between each of my outstretched fingers and the thumbs. I had to squeeze with all my strength to prevent her pulling the paper away from each joint. Apparently the lateral strength holds all the joints in place . I had full strength which was a surprise. I 've just had radiation to my hands in Essen Germany as well as both feet. I will return to have another session on my feet in December. I think Prof. Seegenshmiedt is not going to radiate the hands again. He usually sees patients in the early stages.The lumps in my hands are softening and reducing . Heres hoping. I had correspondence from a member in the US. who had treatment on both hands and feet and the cost was $25,000-00 US. The treatment for 4 target areas and both feet will cost me for the complete treatment 1600 Euros. Keep that in mind .The other thing I was diagnosed at 35 yr and exercised daily until my first operation 15 yr later. Finally I found the first thing of a morning I half fill the hand basin with very warm water place my hand on the bottom of the basin which is slightly curved. With my other hand I apply pressure to the back of the hand .The curve in the basin helps to force the fingers in an upward motion. I then relax and form a close fist . Try it . Regards.

11/20/07 08:10
wach 

Administrator

Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

Sad to hear that you are not a candidate. Massaging might help and is at least worth a try. Radiation is good for small nodules and not that efficient when already strong cords developed. With a 45 deg contracture my guess would be that it is already too late. It might yet help on your other nodules. Your option for your little finger might still be surgery. With an experienced, good surgeon the first surgery is typically successful (though no guarantee).

Who denied your NA, if it was Charles Eaton or Keith Denkler I would trust their judgement. If it was someone who has less experience with NA you might ask one of the gurus. Maybe they have a different view.

Wolfgang

Quote:



I went in for what i thought was gonig to be my first injection of AA4500 this morning. That was not the case after being evaluated by hand therapist ( who said earlier I was a candidate) I was seen by the dr and he said I was not!! Wind out of my sail for sure!! ... Any other advise out there?? maybe radiation?? So far it has not been that bad this past year, just 45 degree in small pip and other tumors have not rteally started to contract..but I know what the future will hold...


11/20/07 21:27
JAnnRunner 
Re: Auxilium AA4500 Phase 3 Clinical Trial Experience

Thanks guys for the info !! I was denied NA by Dr Eaton in 05 after my first failed surgery and another surgery 6 months after my first and it still contracted back to 45 dgrees ( I was 55 before the 2nd surgery) I think it is just really hard to do surgery in the small pip.. now I have scare tissue on the inside of my finger as well. The ring finger has a small pit and fleshy nodule ( 5 degree drag is all) nothing in the palm that I can see. I looked up radiation and ir seems that it is not really good for DC in the joints and tendons.. I will keep up my stretching and working out with weights ( too keep up my strenght and flexability) and will try the warm water and the bowl as well. Thanks again , J Ann

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