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Xiaflex Treated- Success So Far!
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08/23/2018 22:02
rockinroller 
08/23/2018 22:02
rockinroller 
Xiaflex Treated- Success So Far!

60-something male, suffering from DD since discovering nodes in 2014, primarily affecting contracture of the RH little finger and partially the adjoining finger. As of April 2018 the little finger was curved inward 90% to the palm. My father had the disease in both hands and suffered through 2 surgeries, neither of which left him much improved after a few months, but did leave him with horrible scars. After researching Xiaflex thoroughly as well as other treatment options, I submitted to the first of what would be two injections--1 vial each--from Dr. Gregory Sobol in Michigan, who was listed #2 on the Xiaflex site as having administered the most treatments. In late April the doctor injected one vial into the base of the ring finger, into the palm, at several points, where the largest and most obvious cord existed. Although a somewhat painful process in itself, I experienced further side effects later that day as the chemical migrated up my right arm and into that lymph node, causing extreme tenderness and bruising of the chest area near the armpit. However that subsided within a day or two, and I was left with the pain from the swelling of my hand and especially those 2 fingers. I returned for the "manipulation" two days later and experienced some of the most excruciating pain ever as the doctor removed the bandaging and literally "broke" backward the two affected fingers several times in an attempt to dislodge the infecting cords. After several minutes I emerged, bruised and battered, however the fingers (especially the ring finger) appeared vertical for the first time in 4 years. The little finger looked pretty good too, except for a continued sloping of the back side (finger nail area normal, knuckle area normal, but in between was a slight inward sloping). The doctor explained that since the little finger was so affected by the contracture and an additional cord running up about 1" from the palm that he would have to treat it separately in "a month or so". After going through the past three days I questioned whether I wanted to do it all over again despite the apparent improvement. I was sent home with a 'script to see an OT the following week for a splint to be custom created, which I did. The splint had 3 Velcro straps that held both fingers vertical, using leverage from the entire palm. For the first week or so I wore it almost 24/7, then removed it for an hour or two during the day to allow my hand to "breathe". It was obviously cumbersome and somewhat disrupted my sleep. In about 3 weeks the swelling of my fingers and upper palm subsided to the extent that the splint actually became too loose, causing me to go back to the OT and have it refitted. Early this month (August) I submitted to the 2nd injection of Xiaflex, this time directly in the little finger in several locations of the cord that had inhibited the little finger. I recall that event as being even more painful than the first procedure. The reaction to the Xiaflex involving my lymph node of that side of my body was also substantially more pronounced this time, with a huge bruise (about the size of a large grapefruit) appearing just outside my armpit on my chest, and horrible pain and swelling in the armpit itself, lasting almost a week. I mentioned this to the doctor two days later as I attended the manipulation session, and he theorized that this could be my last Xiaflex session that he would recommend. Nonetheless, the manipulation followed, which included two small incisions on critical points of the finger that would "encourage" natural movement. This time--besides the lymph node response--I lost a lot of blood from the manipulation and breaking of skin that had "learned" a contracted position for so many months. I came back a few days later for a follow up and a fitting of new splint by the office PT.

It is now 3 weeks after the 2nd procedure and my little finger seems to still have a small curve in it, although definitely standing more erect than just prior to the 2nd procedure (and definitely much improved compared to its position when I started with the first injection of Xiaflex). I wear the splint every night and in the past week or so I squeeze a rubber ball to exercise the fingers as well as play piano, attempting to reach octaves and stretch that hand more often than less.

Personally, the jury is still out as to the efficacy of this treatment. I am almost certain that between surgery and this procedure, I believe this one was "better" for me--definitely less invasive and the recovery a lot quicker. One of the drawbacks is the cost: Medicare pays 80% of the "approved amount" which, based on my first billing statement is about 70% of the street price (In the US that is currently around $5000 per vial). My cost out of pocket was $800+ per treatment, or $1600 total. My theory is that if I get at least 2 years of normalcy of my fingers I'll do it again. Otherwise I'll explore options.

08/24/2018 06:01
spanishbuddha 

Administrator

08/24/2018 06:01
spanishbuddha 

Administrator

Re: Xiaflex Treated- Success So Far!

Thanks for sharing your story, ouch, here’s hoping for continued improvement with no recurrence.

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