What does “recurrence rate for Dupuytren contracture” mean?
Dupuytren contracture is famous for the fact that in about half of the cases the problem returns about five years after hand surgery. For some people the reappearance is as soon as one year after an invasive operation to remove the cords, nodules and contracted hand tissue. Many people are disheartened to learn that surgery and Xiaflex injections are not a final answer to their hand problem because of Dupuytren recurrence.
Consider a brief delay of Xiaflex injections to see if natural remedies might help
The Dupuytren Contracture Institute is not against Xiaflex injections or surgery for Dupuytren’s contracture. Since 2002 our position has always been to recommend surgical intervention in those cases that have not responded to an aggressively applied round of conservative Alternative Medicine therapy. If a brief therapeutic trial of natural Alternative Medicine treatment has limited results, we then advise to have an evaluation from two doctors who specialize in Dupuytren’s contracture for possible surgical or Xiaflex intervention.
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However, there are those who approach the management of their Dupuytren contracture in the reverse order: They first have hand surgery for their Dupuytren’s problem and only after the problem recurs do they consider conservative treatment.
People from around the world report they rushed into having a hand operation, not knowing of the possible side effects and recurrence issues that develop after invading the area of Dupuytren’s disease. It is DCI‘s opinion that it is safe and reasonable to attempt to improve the body’s ability to heal and repair the problem of Dupuytrens contracture by aggressively using several conservative Alternative Medicine treatment measures for a short time. We strongly suggest that anyone with Dupuytren contracture works with what is known and what is available – even if it is not perfect – before submitting to potentially risky surgery. If DCI’s conservative concepts do not improve or eliminate the hand lump, Dupuytren’s surgery can always be done later.
How low is the Dupuytren recurrence rate after Xiaflex treatment?
Auxilium Pharmaceutical, manufacturer of Xiaflex collagenase injections, boasts that in a two-year study Xiaflex had a recurrence rate of 19.3 percent, a considerably lower rate of return than those who used surgical procedures to treat their hand problem.
The answer to the question “Is the Xiaflex recurrence rate for Dupuytren low?” is a qualified yes and no.
Yes, Xiaflex or collagenase treatment results in a considerably lower Dupuytren recurrence rate than hand surgery. However, this does not necessarily mean that the rate of recurrence is actually low; it only means the problem will come back slower than what happens after invasive hand surgery. The reality is that hand surgery has a tremendously high recurrence rate, so a non-surgical therapy option by comparison will look favorable.
Every child learns that pointing to someone who has done something worse than you does not diminish his crime. When you told your mother that the child next door stole 25 cents from his mother, you were trying to make yourself look pretty good for stealing only 10 cents from her purse. Your mother was not swayed by the faulty logic of a scared child. In the final analysis, even though the numbers were different, both children did something wrong.
And along a similar line of thought, 19.3% recurrence is still a high rate for Dupuytren contracture to come back after being subjected to an invasive medical procedure that carries risks, even though there are other treatment methods that have a considerably higher rate of recurrence.
Most surgeons will admit that any type of physical invasion into the palm (like with surgery or injections) seems to accelerate the progression of Dupuytren’s disease. Patients note that their previously slow progressing hand contracture not only recurred after surgery but worsened at a faster rate.
Perhaps a better question to ask is, “Would you want to undergo an invasive medical procedure like a Xiaflex injection series, knowing that 20 out of 100 people will have to do it again in two years?” The answer should take into account that more injections might not be as simple and uneventful as receiving the first Xiaflex injection.
Xiaflex has a short history of treatment of Dupuytren contracture
Since Xiaflex was given FDA approval for Dupuytren contracture treatment in early 2010, not enough time has lapsed and not enough patients have used this procedure for the FDA to know sure what will happen to those 19.3% of patients who have recurrence within two years after receiving a second – or third or fourth – injection series.
For example, recent research information released about Xiaflex at the three year follow-up shows that 34.8% of joints with initial clinical success experienced recurrence, considerably higher than the 19.3% recurrence rate reported at the two year mark. It is reasonable to speculate that the Xiaflex recurrence rate will continue to increase at the four and five year follow up marks, bringing Xiaflex recurrence much closer to the frequency of hand surgery.
There are two valid issues to consider about repeated injections with a new drug like Xiaflex:
- When Xiaflex is injected to dissolve the collage cord of Dupuytren’s contracture it carries the risk of physician error and unintended drug consequences, such as injection into a nerve or artery, accidental leakage causing destruction of tendons or muscles, or drug side effects.
- No one knows the long term consequences of multiple Xiaflex injections over time into the same area. After all, 70% of people who receive their first Xiaflex injections find that the Dupuytren cord does not break as it should; they must return one month later for another series of injections; if this does not work, they again must return in one month later. The manufacturer does not recommend that anyone receives more than three series of Xiaflex injections if it did not dissolve the cord by that time. In this way the manufacturer of Xiaflex is admitting there is a reasonable limit to how often and how much this drug can be used for the same cord.
Return of Dupuytren after hand surgery
There are two common types of Dupuytren hand surgery. The first is palmar fasciectomy (cutting the palm open to remove the deep connective tissue of the palm and collagen cords) with a 35% recurrence rate after two years. The other is needle aponeurotomy or palmar fasciotomy (inserting a needle into the palm and blindly slashing at the Dupuytren cords wit h the tip of that needle) with an 85% recurrence rate after two years.
By comparison, yes, the Xiaflex return rate of 19.3% recurrence at two years is lower than aggressive surgery. However, this recurrence rate for Xiaflex is said to be low only because the recurrence rates for the other types of surgery are so terribly high by comparison.
At the Dupuytren Contracture Institute we take the position that it is better to avoid the risk the hand problem will return after undergoing any kind of hand surgery by first attempting Alternative Medicine natural Dupuytren treatment.
Hello my name is Mike, I am a 38 year old white male from Canada. I first showed symptoms of Dupuytren’s contracture when I was 17 years old which was misdiagnosed at the time. I have DC in my left hand. In 2009 I travelled to Florida to have a needle aponeurotomy, I found the procedure to be quick, painless and recovery time was two days.
By 2011 the Dupuytren’s contracture returned quickly and I had a palmar fasciectomy as the DC had built a strong cord which brought my pinky finger down to 90%. The recovery process was long, I was on T3’s for about 5-7 days after the surgery.
Dupuytren’s contracture once again returned, attacking the same finger. Xiaflex was now approved for use in Canada. I had the Xiaflex injection without local freezing. It wasn’t the most fun procedure in world. I returned 7 days later, my hand was frozen then manipulated and immediately fitted for a splint.
The manipulation was 5 days ago, I am still mending an open wound from a skin tear, but most of the bruising has gone away. Unlike the PF, I can lift weights in the gym with little issues, it took me almost 4 weeks after the PF to be able to do the same.
I encourage everyone to research your options if you have Dupuytren’s contracture. All things being equal, I would recommend Xiaflex as my number one option, followed by PF then NA. I also feel that if I were in my 60’s I probably would just get an NA every few years as it has the least recovery time.
Good luck
Greetings Mike,
Thank you for sharing your experiences with Dupuytren’s contracture surgery. However, I happen to strongly disagree with you since your experiences are exactly what I have warned people about over the years. Frequent and multiple Dupuytren’s contracture surgeries never end well; eventually – and sometimes soon – no additional surgeries can be performed.
Your personal outline described a history of Dupuytren’s contracture surgical intervention, somewhat rapid recurrence (although some people recur at a slower or a faster rate than you have done), and then a pressing need to have yet another intervention because your DC returns You seem to be assuming that the Xiaflex procedure is your favorite option to date, but I am concerned that this is only because not much time has past since you had it done. From my experience reading hundreds of emails like yours in which people report how their Dupuytren’s contracture surgery results turn out in the short and long term, there is a strong probability that the Xiaflex will give you the faster recurrence of all the procedures you could have done to your hand, and it is the most risky in terms of bad reactions based on reports I review. You mention having a tear of skin on your palm. Some people have reactions in which most of the entire palm surface is ripped open into one large open wound after the Xiaflex procedure. These folks require grafting, additional surgery and permanently abnormal and compromised hand function the rest of their lives, plus having to look forward to the rapid recurrence of another bout of additional Dupuytren’s contracture in the near future. I hear many post-Xiaflex horror stories, even though you have so far liked what happened to you as a result of your Xiaflex procedure. I am happy that it was that way for you, but there are many folks who cannot report the same kind of results.
Lastly you state, “I probably would just get an NA every few years as it has the least recovery time.” In my opinion this is not a good strategy to follow, and perhaps it is even the worse option you can use. You are assuming that you can have seemingly endless Dupuytren’s contracture surgeries on your hand whenever you need them, like getting a haircut when the mood strikes. This is not the case. You will eventually not be able to have hand surgery because you will eventually run out of tissue in the hand with which the surgeon can work. Many people report that after 2-3-4 Dupuytren’s contracture surgeries they have no other option than amputation of varying parts of their hand and varying numbers of fingers. You have been lucky to date, but you do not know what your future holds. At your current age of 38 you are a young guy, and you have many years ahead of you in which you will have to deal with your Dupuytren’s contracture. Good luck to you, sir. Please be careful and guarded when you talk to your surgeon. TRH
I had my first open surgery (Zplasty) for Dupuytren’s contracture on my left hand in 2014. I am fine now and my hand looks amazing, and is perfectly flat. I had some flaring issues and a long course of OT. I still do some exercises when my hand is stiff. I must now decide if I want the Xiaflex injection on my dominate right hand. I work as a nurse and need strength in my hand to return quickly.
I told my doctor (a different one as I work in a different hospital with another insurance carrier) I want another Zplasty for the other Dupuytren’s contracture problem but now I’m beginning to consider Xiaflex injections to get a quicker recovery. I am still gathering information and doing research at this time (Feb 2017). If anyone has info on recovery time I’d appreciate it. I don’t lift weights but I do lift heavy patients.
Greetings Mary,
For those who have not heard of this procedure, a Z-plasty is not unique or specific to Dupuytren’s contracture; it can be done as part of many types of surgical procedures. A Z-plasty is a plastic surgery technique that is performed with one or more Z-shaped lines of incision, not a single straight line of incision. This is done to improve the cosmetic and functional outcome in areas of the body that are commonly stressed or subject to great work loads (like the hand); it makes the scar look better and more durable. t is a fairly common approach for Dupuytren’s contracture because it favors the hand so well. By making a Z-shaped incision in the area in question the future tension and stress on the scar can be reduced. A Z-plasty can be complicated when things go wrong with the small flaps of skin that are created when the extra tissue is cut to create the Z, but a skillful surgeon can minimize that risk. In regard to Dupuytren’s contracture, the Z-plasty can be a feature of a fasciectomy or a fasciotomy.
It is great to hear from someone with such a positive outcome from their Dupuytren’s contracture surgery. It is not often that I receive comments about length of recovery time, since most people tend to be more interested in possible side effects and speed of recurrence. Most often I am told about additional plastic and reconstructive surgery that must be done to the hand after the Xiaflex procedure results in side effects and unexpected invasive tissue necrosis (death) outside of the areas intended for enzyme reduction, or situations in which the hand will develop large surface ulcers that do not heal when the collagenase enzymes invade the surface layers. Seldom do people visit this site who have had good Dupuytren’s contracture surgical outcomes. For this reason I am interested to learn more from our visitors about recovery time after normal and good outcomes after Xiaflex injections.
Mary, good luck with that surgery on your other Dupuytren’s contracture. TRH
I have been treated with the xiaflex injection for Dupuytren’s contracture. it did sting and an ache type feeling during the injection 3 days later I returned to have the cords broken painful but bearable slight tear. it all healed within 3 weeks and the hand was almost straight i have noticed while having a hot shower that the hand has a fatty greasy internal feel leading me to believe the disolved tissue migrates into the surrounding tissue (FLESH). 2 YEARS later the tendon is again being engulfed by the Dupuytren’s contracture nodule once again. The hand is better than before the treatment but is starting to regress. is this common after xiaflex?
Greetings Kevin,
Yes, there is always regression or return of Dupuytren’s contracture after Xiaflex injection. In addition, the fibrous tissue that develops the second time around is always larger than the hand problem that first appeared – every time you upset it, it comes back a little worse than before.
Apparently your Dupuytren’s contracture started to recur a little more than a year after your Xiaflex procedure, which is about average; some have an even faster recurrence (within just a few months), and some can go a few years before the DC reappears.
The question you will sooner or later face is, “How do I treat the recurrence of the Dupuytren’s contracture when I can’t use my hand normally?” That is always a problem. If your doctor suggests something different than a Xiaflex injection, like surgery to remove the nodule, please keep in mind that all surgery results in Dupuytren’s contracture recurrence. All hand surgery disrupts the tissue, triggering a massive reaction that results in more excess fibrous tissue (Dupuytren’s contracture). This is why DCI recommends that everyone first try to help the body remove the Dupuytren’s contracture fibrous material naturally. DCI natural treatment of Dupuytren’s contracture has not once resulted in recurrence.
Many cases of Dupuytren’s contracture goes away on its own in the early stages; the body can and does heal DC through a simple process of self-healing. Since 2002 the Dupuytren’s Contracture Institute has studied how that process of self-healing works and how we can assist that process so that people who do not spontaneously heal when they should can be helped to do a better job of healing their own hand nodules and lumps later. DCI is simply trying to help that process in any way that makes sense. Over time we are slowly putting ideas together that seem to be pushing the success rate up a little bit. Sometimes it works and sometimes it does not help. We do not have all the answers to help people do a better job of eliminating their hand nodules and cords, but what we do is often significant. Our success rate with Dupuytren’s contracture is that we get 8-10 reports of improvement (from moderate to marked) for every one report of failure. As we learn how to use the natural vitamins, minerals, enzymes and other therapies better perhaps the reports of improvement will increase. Please look over the information on the DCI website so you can learn how this can be done.
Good luck with your Dupuytren’s contracture. TRH
Do you ever publish any comments from those that tried natural products but not successfully for Dupuytren’s contracture?
I am considering but it is expensive.
Thanks,
Rita Tracy
Greetings Rita,
Throughout several hundred reader’s comments scattered around the DCI website I repeat that not everyone responds to Dupuytren’s contracture Alt Med therapy; the usual way of saying it is, “I get 8-10 reports of improvement (from moderate to marked), for every one report of failure.” For actual emails from the people who are having slow progress early in care, and my suggestions and ideas for how they can do better with their Dupuytren’s contracture treatment, you will have to read the monthly newsletter I send to men and women who are on the DCI and PDI mailing list.
Yes, it costs a few hundred dollars to get started with Dupuytren’s contracture treatment, and a hundred (+/-) dollars a month to continue treatment. But that is nothing compared to the cost of hand surgery ($10-20 thousand?), or Xiaflex injections ($6-8 thousand?), plus the fact that those same costs will be repeated again in a few years when the Dupuytren’s contracture problem recurs, and yet again when still another recurrence develops. Just something to think about when it comes to costs, both monetary and personal.
Let me know if you want to know more about Alt Med Dupuytren’s contracture treatment. Good luck. TRH
Xiaflex injection for Dupuytren’s contracture in my case was GOLD – left hand pinky finger stuck at 90 degrees towards palm for a few years (I thought I had smashed my knuckle while working at my wood pile) and was floored when she told me why it was bent. Had gotten to really be bothersome as I couldn’t put hand in pocket & it was starting to “get in the way.” My surgeon said she thought I was a perfect candidate for this. Had injection two weeks ago, two days after she manipulated my finger straight & I have not taken anything at all with pain in mind-mild to be honest like bee stings at best, some swelling & a couple blood blisters. I already have the mobility I was wishing for & so missed being able to set my hand/palm down flat- Had I had surgery it would have been months after to be where I am at in two weeks-THANK YOU & do not be afraid of this if it is suggested, it beats getting cut. VERY PLEASED with experience/outcome. Tim
Greetings Tim,
So glad to hear your early report of a favorable outcome with Xiaflex. Most stories after Dupuytren’s contracture surgery are not like this. As I have written many times in other articles, “The skill of the surgeon is so terribly important with Xiaflex injections for Dupuytren’s contracture. When done by an incompetent doctor the results will be disastrous, and when done by someone with the hands and heart of an angel the results can be surprising. The problem is finding that highly skilled surgeon; they are rare. It is better to avoid surgery by first trying to heal Dupuytren’s contracture naturally.”
This article discusses the recurrence of Dupuytren’s contracture after Xiaflex injection. You do not know yet about your recurrence since you just had your surgery. I hope that you will come back in a year to report how you are doing. Thanks for your comments. TRH