I had one injection on Sept. 29th and another on Nov. 16th in my left pinkie which was 85% contracted. I had the injection done in Boston by a doctor who was part of the clinical trials.. I am very pleased with the results. I have about 15% contracture now, but I am doing exercises every day and sleeping with a split that the physical therapist made. I had 2 injections, 6 weeks apart. The first was somewhat painful as my finger swelled. The next day the cord popped during the manipulation, and it was amazing to see my finger almost straight. I could move it right away, and was pleased. Last week, another part of the cord popped and this time it was less painful. The only problem I am having is some sensitivity along the out side of the finger near the knuckle. The doctor feels this will go away in time, as I use the finger. I had the disease for about 8 years and was considering surgery. Now I am awaiting my next appointment to do my right hand, which isn't quite as bad as the left was.
After waiting 2 months for insurance approval, I had a Xiaflex injection to my left #5 digit (pinky finger). The injections were given to a cord which was between the first 2 joints in the little finger as that was the source of the contraction. The company rep happened to be in the office and with the doctor they were able to pinpoint the best spot for the injections. The doctor administered 4 injections (from the single dose) to the fascia at an angle parallel to the upward facing palm so as not to get near important tissue (tendons, bones, nerves). Each time he injected it felt like a very strong bee sting which abated during the injection. This was by far the worst part of the whole process. The doctor says Xiaflex recommends no anesthesia for the injection. I walked out of the doctors office with only a small band aid covering the injection holes.
3 hours later, I started getting swelling and pain (which was easily controlled with Tylenol) and the pain was severe if I tried to move or touch my finger. The swelling and bruising grew but by keeping my hand elevated it limited the pain. It was rough sleeping since it was easy to accidentally bump the hand (causing great pain like a bunch of needles).
Within 24 hours I went back to have the cord manipulated and received local anesthesia (as recommended by Xiaflex) injected into the palm of the hand which was a bit uncomfortable. 15 minutes later after my hand was adequately numbed and with the doctor's assistance, I pressed down on the end of the finger (all the while self-monitoring the pain) and in five seconds there was what felt to be a joint shifting. This was the release of the cord. I can now straighten the finger (with some discomfort from the shots and bruising).
This is a very positive development, a textbook perfect example for using this medication and although not an easy process the outcome appears to be excellent.
I will continue with Tylenol, stretching the finger straight, soaking the hand in Epsoms salts and using an ultrasound to hasten the healing.
One week later after Xiaflex injex. I have full flexion of the #5 digit and there is a small blood blister in the remaining bruised area of about 1/4" in diameter near the base of the finger (MCP joint) which burns when stretched or is accidentally bumped. This bruised area has gradually gotten smaller in size day by day. I saw the doctor for first follow up today and he is very happy with the results of healing - exceeding his expectations.
Throughout the past week there has been a feeling like a contusion in the arm extending from under forearm and under the upper arm which is noticeable when arm is stretched above my head. This has also diminished over time.
The finger appears normal and there is no noticeable swelling, although it feels slightly swollen when I make a fist.
I'm new to this forum and have read with interest the experience of others using Xiaflex. I had my first shot yesterday after a long wait for approval by my insurance co (BC/BS). I was told in July that I was a good candidate for the treatment on the first joint of my right ring finger. I had about a 42 degree contraction. I was told there would be a wait while the approval went through. In November I called the doctors off ice to see how things were going and they said they would look into it. A couple of weeks later, (late November) I got a call from CVS Caremark's specialty pharmacy saying that the Xiaflex was approved with a $7 co-pay and would be delivered to my doctors office in about 4 days. A week later I called my doctor and after a couple of calls Later, finally spoke with the scheduling nurse who set me up for an appointment yesterday (12/8).
Went in for the injection and found that the needle pricks hurt quite a bit but the injection of the Xiaflex almost painless in comparison. 5 needle pricks later and about 5 minutes, I was wrapped and on my way out. Very little discomfort for the rest of the day. Slept with the bandage on because it was comfortable, but experienced some stinging and soreness in the hand during the night and some discomfort in my armpit.
Took the bandage off this morning. There is a little swelling and some bruising at the injectiion site but otherwise looks OK. I'm off for manipulation in about 20 minutes and from reading the posts here not looking forward to the process. Sounds as if the numbing is painful. My doc said yesterday that this would be the worst part. Yesterday was not fun, so I can imagine what today will be.
When I can type again I will update with the results.
BTW has anyone been reading about the problems in the management salesforce at Auxilium? Seems as if there are a lot of disgruntled employees. Google "cost of Xiaflex" and see what I mean.
A search on "cost of xiaflex" didn't really turn up anything on recent internal problems. Can you give us a specific link?
Auxilium has priced Xiaflex so high that doctors won't pay for it, because it takes so long to get reimbursed due to the insurance companies' reluctance to cover it. And patients are afraid of getting stuck with huge charges. So, very few practices are offering it, and patients (like myself) aren't asking for it.
Needle aponeurotomy requires training, but after that there's no cost to the surgeon and it's routinely reimbursed. And even if it isn't, it's cheaper than Xiaflex and only requires 1 office visit.
All of this has been obvious for years, and I don't quite get why Auxilium seems to have been in denial. They have to cut the cost to get widespread use.
I had my follow up visit today. As I stated in my previous post, I was quite apprehensive about the "straightening" procedure and the reported associated pain. The injection of the Novicane? hurt quite a bit, but on reflection, wasn't as bad as yesterdays needle pricks. About 30 seconds of fairly sharp pain and it was over. once the finger joints were numb, the manipulation to pop the cords was almost painless. On the third extension, everyone in the room (Dr., nurse, my wife, myself, and a Xiaflex sales rep,) heard a fairly loud "pop" and my ring finger straighten for the first time in years. The doc made a temporary splint and we were out of the office after only about 15 minutes.
Home now, typing with just my left hand, waiting for feeling to return to my right. The doc promised some pain later and I've taken a couple of Tylenol just in case.
So far, so good. I have an appointment with physical therapy tomorrow to have a splint made that I will wear at night for the next 3-4 months.
No complaints from this treatment. Xiaflex seems to have delivered on everything promised. If this treatment is any indicator, the company should do well. The cost, though high, is less than surgery, and recovery period hopefully will be relatively short.
Saw the physical therapist today and she made a very comfortable splint that I'll wear on the back of my hand at night to keep my ring finger straight. She also gave a routine of exercises to strengthen and stretch the tendon.
My hand feels very good and I have almost full extension of all my fingers. There's a small blood blister at the site of the injection that is still tender to the touch. There is very little swelling and by the end of the day I am now able to flex my fingers from fairly tight fist to straight. There is a slight stretching pull feeling when straightening the ring finger.
I'm impressed with the speed of returning to normal. Not totally there yet, but 36 hours after straightening, it sure feels good.