| My xiaflex experience |
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04/04/2012 05:07
wach  Administrator
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04/04/2012 05:07
wach Administrator
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Re: My xiaflex experience
Hammer, I believe recurrence depends strongly on
a) whether the cord was broken during manipulation
b) which joint is affected
c) age.
The so far published data on Xiaflex are for patients from the trial (which is a specific type of patients) and only for those where the manipulation as effective. recurrence data for a larger population are probably not quite as good.
Wolfgang
hammer:
Hey Bailey,Ive had 4 xiaflex injections in my right hand starting in November and the last one was March 10th did you have much itching and how much does your finger contract when you havnt been splinting during the day?I would like people to know that its not a pain free treatment.Im also curious on the recurrance even though the numbers are looking good after the 6 year study.Good luck on that next injection.Dave
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04/04/2012 05:59
bailey1 
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04/04/2012 05:59
bailey1
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Re: My xiaflex experience
callie:
bailey1,
What has been the advice given to you about surgery? I only ask because I lean toward surgery in situations like yours. My finger was very similar to what you have experienced. I had surgery about 10 1/2 years ago and you couldn't tell that I ever had Dupuytren's in that hand except for a very faint scar. I have zero contracture and full use of my hand and finger.
Over the years, I've been to 5 doctors concerning my Dup. The advice I've been given regarding surgery is it should be a last resort. the reasons are as follows: 1) It is very invasive and other less invasive methods should always be tried first. 2) The recovery from surgery is much more extensive than other treatments and the cost is much greater. 3) Because of extensive internal scar tissue created from surgery, it greatly reduces your options for the other treatments. After surgery, NA treatment is almost impossible and although xiaflex is somewhat new, I've been told by the doctor that getting the injection correctly into the cord would be much more difficult because of the scar tissue left over from surgery.
4) although it appears you've had great results from your surgery, most cases do not turn out as good as yours. The reoccurence after surgery is still there and other treatments should be utilized first. If after my xiaflex and it does not work well or comes back within 2-3 years, I may then consider surgery. It's wonderful to hear you had such success with surgery and if the doctors could say that after surgery Dup is probably not going to return for at least 10 years, then I would say surgery is absolutley the way to go, but right now the fact is the doctors can't say that.
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04/04/2012 06:18
bailey1
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04/04/2012 06:18
bailey1
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Re: My xiaflex experience
wach:
Hammer, I believe recurrence depends strongly on
a) whether the cord was broken during manipulation
b) which joint is affected
c) age.
The so far published data on Xiaflex are for patients from the trial (which is a specific type of patients) and only for those where the manipulation as effective. recurrence data for a larger population are probably not quite as good.
Wolfgang
hammer:
Hey Bailey,Ive had 4 xiaflex injections in my right hand starting in November and the last one was March 10th did you have much itching and how much does your finger contract when you havnt been splinting during the day?I would like people to know that its not a pain free treatment.Im also curious on the recurrance even though the numbers are looking good after the 6 year study.Good luck on that next injection.Dave
First you are absolutely correct about the pain. I don't know where they got the information that it's just like a little pinch. BULL!!! It hurts. No it's not excurtiating pain, but it does hurt a lot. The xiaflex injection takes about 7-10 seconds and is painful. the next day before manipulation, you receive numbing injection(s) and they hurt as well. It is worth it, but do not believe there is very little pain involved. The good news is the manipulation or straightening of the finger is painless. however you can hear the cord cracking and breaking and might bother those that are squimish.
Also, depending on how bent your finger is there will be trauma to the finger and pain for a few weeks. I would equate it to a the pain of a very bad sprain or dislocation. Yes, I've had itching, but the doctor told me this is normal and is part of the healing process and although the itching will will slowly disapate it will still itch from time to time for about 6 months. When i remove the splint, my finger is about 1/4' from being completely straight. I can almost make a fist, but it is a loose fist and is still somewhat painful to do so. But remember my xiaflex treatment is only about 1 month old. so I expect that part to get better. So far the reports of reoccurnce from xiaflex is very good. My research shows that reoccurence within 2 years is as follows: NA -72%, surgery-34%, xiaflex-17%. But remember xiaflex is new so the number in the study group is smaller than the other groups, but it still looks good. Hope this help and let me know if i can answer any other questions.
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04/04/2012 06:40
wach Administrator
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04/04/2012 06:40
wach Administrator
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Re: My xiaflex experience
Hi bailey1,
so far only a few data have become available regarding recurrence after Xiaflex. In February this year Annett van Rijssen et al. published their 5-year data comparing NA and surgery (http://www.ncbi.nlm.nih.gov/pubmed/21987045) and additionally compared to so far published collagenase results. They conclude "These results indicate that the recurrence rate after collagenase is considerably higher than after limited fasciectomy and percutaneous needle fasciotomy". This is based on very limited data though. But, unfortunately, it doesn't indicate that Xiaflex is better than NA (= percutaneous needle fasciotomy) with respect to recurrence. But there are many factors influncing recurrence and you might be lucky as well.
Wishing you success!
Wolfgang
bailey1:
Had my first injection and manipulation 3 weeks ago and my experience has been somewhat different than what I've read on this forum. Not in a bad way just different. In 2 days I go and get another injection to straighten ring finger. I 1st noticed nodules in my palm 12 years ago. Before NA treatment and now with xiaflex, my pinky was bent so bad the tip was almost touching the palm. I had my 1st NA treatment 6 years ago. It came back with 18 months. 3 years later, went for 2nd NA treatment and it came back in about 14 months. So now I'm trying xiaflex. ...
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04/04/2012 15:39
callie 
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04/04/2012 15:39
callie
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Re: My xiaflex experience
I think some information, like what "bailey1" has accumulated, does a disservice about surgery for Dupuytren's. To wait until contracture is as Bailey1 described for himself is not a great time to have surgery. Naturally the good outcome will be considerably more difficult than having surgery at 25-40 degrees contracture. But, this seems to be the accepted information being promoted.
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04/04/2012 16:05
bailey1
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04/04/2012 16:05
bailey1
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Re: My xiaflex experience
wach:
Hi bailey1,
so far only a few data have become available regarding recurrence after Xiaflex. In February this year Annett van Rijssen et al. published their 5-year data comparing NA and surgery (http://www.ncbi.nlm.nih.gov/pubmed/21987045) and additionally compared to so far published collagenase results. They conclude "These results indicate that the recurrence rate after collagenase is considerably higher than after limited fasciectomy and percutaneous needle fasciotomy". This is based on very limited data though. But, unfortunately, it doesn't indicate that Xiaflex is better than NA (= percutaneous needle fasciotomy) with respect to recurrence. But there are many factors influncing recurrence and you might be lucky as well.
Wishing you success!
Wolfgang
bailey1:
Had my first injection and manipulation 3 weeks ago and my experience has been somewhat different than what I've read on this forum. Not in a bad way just different. In 2 days I go and get another injection to straighten ring finger. I 1st noticed nodules in my palm 12 years ago. Before NA treatment and now with xiaflex, my pinky was bent so bad the tip was almost touching the palm. I had my 1st NA treatment 6 years ago. It came back with 18 months. 3 years later, went for 2nd NA treatment and it came back in about 14 months. So now I'm trying xiaflex. ...
From the Dupuytrens Contracture Institute located at dupuytrens-contracture.com ///
Each patient undergoing these injections must know that the recurrence rate of Dupuytren contracture after Xiaflex treatment is for 19.3% recurrence after two years. This is a lower recurrence rate compared to fasciectomy (34% recurrence) and needle aponeurotomy (85%,recurrence), but still recurrence of the problem. At this time no one knows if this recurrence rate increases with each subsequent series of injections, or if the degree of Dupuytren thickening worsens each time recurrence occurs.. Also, at this time, no one knows if the long term effects of repeated injections of Xiaflex on healthy tendons, ligaments, arteries, veins and blood vessels.
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04/04/2012 16:21
bailey1
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04/04/2012 16:21
bailey1
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Re: My xiaflex experience
callie:
I think some information, like what "bailey1" has accumulated, does a disservice about surgery for Dupuytren's. To wait until contracture is as Bailey1 described for himself is not a great time to have surgery. Naturally the good outcome will be considerably more difficult than having surgery at 25-40 degrees contracture. But, this seems to be the accepted information being promoted.
I'm just stating what I've been told by 5 Ortho surgeons and it just so happens the research I've done seemed to agree with what these surgeons told me. I don't feel its a disservice to inform others suffering from Dup of this information. I "strongly" believe the opposite and think the disservice would be to have this information and not pass it along. It would be a disservice to have been told this same information by 5 accomplished doctors, 3 of whom specialize in problems of the hand and wrist, ignore it and not pass it on to other sufferers. I by no means am not telling anybody to not get surgery. That is a personal decision one and his doctor has to make. I'm simply passing on what I've been told. What one does with the information is entirely up to them. I still stand by my statement of surgery being a last resort. I personally have not ruled out surgery, but I felt the best action was to follow what these doctors told me and to not go with surgery unless other treatments have failed.
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04/04/2012 17:00
callie
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04/04/2012 17:00
callie
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Re: My xiaflex experience
I'm just curious why you would go to "5 Ortho surgeons" to get the exact same information?
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04/05/2012 00:36
hammer 
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04/05/2012 00:36
hammer
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Re: My xiaflex experience
Hey Bailey,Ive been to 7 hand surgeons in 3 states.It sounds like you also have a very agressive case like myself.Having had 4 surgeries in 6 years only to have it come back worse after each one.Spanishbudha posted some pics of my hands last week and it will show what a very agressive case looks like I wish we all could be in the one and done club but its not the way its been for me the last 17 years.All we can do is keep tryin and keep splinting.Dave
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04/05/2012 05:48
wach Administrator
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04/05/2012 05:48
wach Administrator
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Re: My xiaflex experience
Hi bailey1,
The below statement of the Dupuytrens Contracture Institue is really misleading. To understand this you need to look a little into details: recurrence depends on how effective the initial treatment had been. The data from van Rijssen (comparing needle fasciotomy and surgery) take into account all treated patients, irrespective of the amount of correction. The Xiaflex study only tracks patients who had full correction (less than 5 deg of extension deficit). That makes a fairly big difference. Therefore van Rijssen et al., in their publication of February this year where they present their 5-year data, also include a section where they filter their data in the same way as the Xiaflex study. Plast Reconstr Surg. 2012 Feb;129(2):469-77. http://www.ncbi.nlm.nih.gov/pubmed/21987045
"In a study conducted by Hurst and Badalamente in 2007, the recurrence rate, defined as a return of contracture of at least 20 degrees in successfully treated joints, was 19 percent after 2 years. If we would apply this in our study, recurrence rates would be as follows. In the metacarpophalangeal joint, we reached “success” in 72.1 percent (132 of 183 joints). The recurrence rate would be 5.3 percent (four of 76 joints) in the limited fasciectomy group and 21.8 percent (12 of 55 joints) in the percutaneous needle fasciotomy group after 5 years. In the proximal interphalangeal joint, we reached success in 34.3 percent. The recurrence rate would be 5.3 percent (one of 19 joints showed recurrence) in the limited fasciectomy group and 23.5 percent (four of 17 joints) in the percutaneous needle fasciotomy group. These results indicate that the recurrence rate after collagenase is considerably higher than after limited fasciectomy and percutaneous needle fasciotomy, even after a considerably shorter follow-up period."
Taking into account that van Rijssen presents 5-year data while Hurst and Badalamente present 2-year data, the recurrence of surgery and even of PNF seems to be superior to Xiaflex. Now this is based on very limited data and further research is required but the below statement of the Dupuytrens Contracture Institute is obviously misleading with respect to recurrence.
Wolfgang
bailey1:
From the Dupuytrens Contracture Institute located at dupuytrens-contracture.com ///
Each patient undergoing these injections must know that the recurrence rate of Dupuytren contracture after Xiaflex treatment is for 19.3% recurrence after two years. This is a lower recurrence rate compared to fasciectomy (34% recurrence) and needle aponeurotomy (85%,recurrence), but still recurrence of the problem. At this time no one knows if this recurrence rate increases with each subsequent series of injections, or if the degree of Dupuytren thickening worsens each time recurrence occurs.. Also, at this time, no one knows if the long term effects of repeated injections of Xiaflex on healthy tendons, ligaments, arteries, veins and blood vessels.
Edited 04/05/12 08:54
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