I'm a 34 year old male with bilateral DC affecting the 3rd, 4th and 5th digit of each hand.

I had some mild contracture with about 4 or 5 nodules of the right hand beginning about 3 years ago (no digital contracture yet), and I think I received my Xiaflex 2 years ago and it worked great. The downside was the swelling after initial injection, tenderness and grip strength for a few months after release.

Now my right hand is at it again, large nodules in the 5th (pinky) first joint, and about 8-10 nodules in the hand total, +90 degree 5th contracture and mild 3rd and 4th contracture.

Left hand had about 7 nodules, again mild contracture of 3rd and 4th with no nodules in the fingers themselves.

My doctor now wants to be very aggressive in treating the condition given it's aggressiveness and my young age. I had about 2 vials injected 4 weeks ago with a somewhat successful manipulation a week later. The 5th digit nodule was very tight and there was worry about breaking the finger itself to try and get the cord to fully release. We got it much better (after swelling it's nearly straight, PIP nodule still present), bruising down the palm where the cord was and some scabbing of the skin due to nearly splitting the skin. Many of the palmar nodules/cords released, but not all of them.

Went in this past Wednesday and received another vial into both hands, again with swelling and discomfort, but not as bad as the last time (much less due to less xiaflex needed), especially since the tissue wasn't so dense. This Friday I had a mildly successful manipulation where the doctor had to do some NA to release some of the cords. Some of the smaller cords still exist between nodules in the middle of the palm, but with a bit of stretching I can place my hands together in front of my chest like I'm "praying" and have my palms touching--something which was completely impossible before.

I go back in another 3 weeks for possibly more Xiaflex, which I'm somewhat looking forward to but at the same time I'm not. Getting the injections hurts like hell, and getting the lidocane injections before the manipulations is no treat either along with the swollen and tender hands for days/weeks after.

Just thought I'd share my story. It's a miracle drug for me!

Hi , I also agree ! After the problems with my left hand two years ago after a major fasciectomy operation , the Xiapex operation on my right hand was so straight forward .
1. Initial injections were a little painful
2. Very little bruising or swelling .
3. A small amount of skin splitting
4. Little and ring finger now zero contracture on MCP joints
5. Best of all , back fly fishing already , and using my right hand normally , just over three weeks post operation .

Great news. Time to hit the rivers soon mate!

You have a great attitude. The power of positive thinking. Mabe our hands are not back to perfect or normal, however using our hands no matter the limitations is the bottom line. Always wear a splint or Fixxglove so the contracture will not reoccur.

Grandchildren are always a great inspiration!