I have been a long time follower of this site and its predecessor--extremely helpful to me. I have dups in both hands, with the right little finger being at 45 degrees--probably eight years with dups. For years my approach has been to monitor as I saw the progress of xiaflex thru the FDA. I had one experience with Dr. Eaton and NA which helped but modestly at best.
This week I experienced Xiaflex and wanted to report on several fronts:
1. Doctor. I saw Eric Balaguer in New York. Young hand surgeon open to Xiaflex and was part of the clinical studies pre FDA. Knowledgeable, experienced, solicitous and otherwise helpful--high marks all around.
2. Insurance. Totally covered as Auxillium is going out of its way to pave the path and working with the doctor's office. A representative of Auxillium was actually present for my two days.
3. First day. The shot was felt for a brief period but not horrible. A few hours later I experienced a lot of pain when my hand took certain otherwise normal rotations. It felt like the cord was trying to break and the pain brought me to my knees. Slept sound that night and there was discoloration to the hand but fairly minimal (happily surprised the doctor).
4. Second day. Saw Dr. Balaguer early in the morning. First had a shot to the hand to reduce pain, much like going to the dentist and same degree of needle discomfort. As for the manipulation of the finger, the process was not long but I was sweating bullets (whether from fear or actual pain, I'm not positive). Finger was straight when I left in a temporary splint--rather shocking after so many years living with dups. This process was probably 20 minutes or so. Rest of the day, no pain.
5. Splint> Immediately went to a therapist for a hard night splint that was made and which I wore last night. No problem and no pain, no issue with sleep.
6. The Day After. No pain, but swelling to hand and knuckles. A little discoloration but minor. Ran a race this morning, no problem. Probably won't be on the tennis court for a week. The hand feels sensitive and obviously swollen. It will take some getting used to with a little finger that is functional.
7. Bottom line--I'm a big supporter of this procedure for the right person and can fully endorse Dr. Balaguer on this procedure, no reservations.
Hope this helps the group.
Jeff

Tough question in terms of timing and it mostly comes down to medical input and your own gut sense. I could have waited longer but felt that I had a better shot now (with 45 degrees) and didn't want to impact lifestyle going forward. Obviously the data on xiaflex is still rather early. Btw, it feels great to type on a keyboard with a functioning pinky.
On cords, I did the one cord and suspect that separate injections may be required for multiple but I'm not the expert. On reforming, the data thus far seems to have a low recurrence rate. Finally, I sensed the breaking but it didn't feel like much and no pain. I have to admit to not looking--left that to the doctor and my wife. If anything, I was startled to see a straight finger. I don't know if there are indeed broken cords there or they were dissolved--I can't notice anything and it doesn't bother me.
Hope this helps.

Now there is a subject we can agree upon and one which may have a wide audience--I hate dealing with insurance companies, I detest their sanctimonious attitude on "reasonable and customary", and I have never understood why some charges cause a co-pay and others don't. Often a total mystery. But I often see that if I am persistent and continue to write letters to senior management, I can eventually manage a breakthrough.
Back to the point, I will be curious to see the actual amount paid by the insurance company for Xiaflex--somehow I don't think the rack rate will apply.

The cost relation depends on how many shots of Xiaflex you actually need. It might be more than one. Thereis some hope that the price of Xiaflex will come down eventually, as Dr. Hurst recently expressed on a conference.

Wolfgang

Hi,

As you know I have posted about my own experience with xiaflex; two injections to address two significant contractures. You can go back and read my posts for detail. I have had very good results with xiaflex and recommend that you think again about it. The procedure is very simple, release for the MP joints was nearly 100%, and I was able to use my hand within 36 hours and played golf seven days later.

My own experience is that xiaflex is better than NA, and seems far preferable to hand surgery and the 6-9 month recovery time. The doc who administered my xiaflex is a prominent hand surgeon. His view on surgery is this: "1/3 of my Dupuytrens patients are happy with the results of surgery; 1/3 are OK and 1/3 or hand surgeries do not heal well". Tough odds.