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Xiaflex?
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05/05/2017 17:55
rockinroller 
05/05/2017 17:55
rockinroller 
Xiaflex?

I am sure this subject has been belabored on this site but I'd be curious to get D.C. victims' reviews of Xiaflex--especially those who might share a similarity to my condition, age, etc: I am a 66 yr old male of Eastern European heritage. My father suffered from D.C. in both hands beginning in his early 70s through the date of his death at age 92. He underwent surgery which--IMO--resulted only in permanently scarring his hands, while improving the contractures only for a few months. Not living nearby or being able to monitor his condition, I recall that his fingers curled inward more dramatically a few months after the surgery than before, although that may not be an accurate observation due to my limited opportunities to see him. My one brother has both D.C. and P.D., was treated for the latter but puts up with the former. He's 3 years my junior. My older brother has neither condition.

In 2014 I noticed what I assumed to be a callous build-up at the base of my RH little finger, however it never went away. I thought nothing of it until a cord developed from that callous area up the base of my little finger. At this time (3 years later) that "callous" is literally a protruded mass from the original upper-palm location to approximately the first crease in my little finger. My LH palm shows a cord beginning--in about the same area (no callous), but at this time it does not affect the contracting of any finger and is comparatively small in size. I saw an ortho surgeon in late 2015 who diagnosed my condition and suggested surgery (he dealt in no other procedure for D.C.). Not satisfied to go down the same road as my father, I began researching Xiaflex, initially concluding it was the "perfect" option for my condition. I visited yet another ortho surgeon who specialized in administering Xiaflex. He seemed cavalier after examining me, about prescribing that procedure--almost to the point that I concluded he had not given much thought to my condition. The long and short is I did not have a confident feeling in either him or his treatment suggestion. I did more research online including getting on to this site, and tried to read as many reviews from D.C. sufferers who had undergone the 3 most common medical treatments for the condition. I had personally concluded that NONE of the options were consistently endorsed.

Finally, a couple of months ago I visited another ortho surgeon who actually specialized in all three common treatments (excluding RT). I was surprised and dismayed to be informed after my exam that no treatment option would be advisable, given the location (little finger) of my condition, citing variables such as nerve damage (in the case of surgery) and the risk of Xiaflex being used for treating D.C. in the little finger (tendon dissolution, etc).

As I continue to see deterioration in my little finger--more so since I am a part time musician (keyboards, wouldn't you know it!) including little things when wiping my face with a towel, or sticking my right hand into my pants pocket, etc--I am more zealous than ever to engage in some sort of "fix"--even one that's temporary and needs repeating (as long as it would last at least several months), in order to mitigate my condition. I am leaning again toward Xiaflex, simply because it's a simple injection, no major weekly therapy required and the results would be evident within a very short time.

I'd appreciate anyone on this site giving their opinion regarding Xiaflex treatment, its effectiveness, adverse effects, etc.--especially anyone out there that either shares a similar location of D.C. (little finger), similar age, sex, etc. Thanks.

05/05/2017 18:36
spanishbuddha 

Administrator

05/05/2017 18:36
spanishbuddha 

Administrator

Re: Xiaflex?

Hi rockinroller

I have not had collagenase so cannot speak from experience. In general it does appear to be quite successful for many treating cords in the palm that are causing a contracture, less so for cords in the fingers and especially the pinkie.

Treating long term pinkie contracture can be problematic for NA, Xiaflex and even surgery, so your doctor is likely giving you his/her honest opinion. The enzyme is injected directly into the cord, so it needs to be well defined and clear of tendons and nerves. Even then the pinkie may not straighten completely and if it does may well curl again. Experience of the doctor seems to be very important so it's always worth getting a second opinion. Some doctors and many patients are very happy with the use and results of collagenase, but also for quite a few it is an unfortunate experience with pain, partial results, recurrence or a flare.

There is a mixture of experiences good and bad you can browse through in the forum, whilst waiting for someone with personal experience to come along. However individual experience does not necessarily transfer, so a second opinion is your best option I think.

Best wishes SB

05/06/2017 07:27
wach 

Administrator

05/06/2017 07:27
wach 

Administrator

Re: Xiaflex?

My personal experience: I am about your age and have contracture of the PIP (=middle) joint of my little finger, including a fairly sized lump between the middle and the base joint. I had the contracture treated first with Xiaflex (recurrence after 1.5 years, after I stopped wearing a night splint) and then witn NA (still Ok because I contrinue wearing the splint at night). Both procedures worked and both achieved about the same result, the joint not fully straightened but much better than before. Xiaflex was a little more painful, I had bruising and the hand swell but after 2 weeks that was gone. NA was easy going, painless, I took off the plaster after 2 days and that was it.

Generally lhe little finger, and especially its PIP joint, are difficult to treat, both with Xiaflex and NA, and recurrence is imminent. But the procedures can be repeated, while another surgery of the little finger is more difficult because there isn't much flesh to cut and after the first surgery scarring is likely dominant.

Wolfgang

05/06/2017 11:24
rockinroller 
05/06/2017 11:24
rockinroller 
Re: Xiaflex?

Here's a close-up pic of my little finger and the two "bulges" of growth, one at the base of the finger, extending upward approximately 3/4", and the extension of that mass into the upper palm area.

So my thinking after these two responses is that injecting Xiaflex in general would not be a long-term fix. And specifically since it's my little finger that's experiencing the biggest issue, it would not be recommended. NA is an alternative option but I've not seen a specialist who endorses that technique. I've had 3 of the four orthos suggest surgery as an option, with the 4th (also an ortho surgeon) describing the risks associated with that--especially when working close to or on the little finger.

Looks like I'm stuck with what I have. Maybe there's some homeopathetic treatments that would reduce the swelling of the nodes, etc?

Attachment
DC.jpg DC.jpg (22x)

Mime-Type: image/jpeg, 25 kB

05/06/2017 14:06
wach 

Administrator

05/06/2017 14:06
wach 

Administrator

Re: Xiaflex?

None of any of the available treatments can heal Dupuytren's because it's a genetically based disease. Treatments are all treating symptoms and the disease will likely come back sooner or later. I don't think there is any homeopathic treatment that can slow down or stop progression of Dupuytren's, the only option in this respect is radiotherapy but from my understanding your nodules might already be too big for RT. Mine was a little smaller than yours when I had it irradiated but that did not help. For me RT was very successful, when the nodule was palpable but small.

Personally I would go either for Xiaflex or NA. Which one is better is difficult to say because it depends where your cords run (and they are probably below your nodules). Ideally you would consult a doctor who does both and can advise on the best route. Normal surgeons will always advise surgery, what else?

Wolfgang

Edited 05/06/17 17:07

05/06/2017 16:42
spanishbuddha 

Administrator

05/06/2017 16:42
spanishbuddha 

Administrator

Re: Xiaflex?

If you can travel, and insurance allows, send (better) photos to Dr Pess in NJ. He will advise whether it's worth an appointment for physical exam, and subsequent NA or Collagenase. He's about the most experienced 'close' to you.

05/06/2017 17:51
mikes 
05/06/2017 17:51
mikes 
Re: Xiaflex?

Rockinroller,

I don't know where you'er from but my experience suggests that the expertise/experience of the doctor is of paramount importance. In my case I had the small finger PIP joint contracted at 90 degrees and went to visit Dr. Keith Denkler of Larkspur (San Francisco area), CA. Like Dr. Pess, he is one of the most expert/experienced doctors in the US treating this disease. In my case, NA was quite successful, although not quite perfect. Per Dr. Denkler's instructions, I did follow up with a few months of hand therapy, and night splinting for the first 3 years or so, gradually diminishing over time. The NA Procedure was performed in November 2006 when I was 55 years old and is miraculously still holding, though I now have other signs and symptoms in other fingers, which I monitor closely.

Of course the above is no guarantee. All indications are that the disease varies quite a bit from individual to individual. Dr. Denkler also uses Xiaflex when he thinks it best.

Good luck!

05/06/2017 19:02
rockinroller 
05/06/2017 19:02
rockinroller 
Re: Xiaflex?

Thanks for the comments. I live outside the Detroit area. There's several doctors who are listed on the Xiaflex site in my general area, including two that I've already seen. Due to the localization of my issue on my little finger, the consensus is that Xiaflex would not be a recommendation.

05/08/2017 01:52
peterinusa 
05/08/2017 01:52
peterinusa 
Re: Xiaflex?

Hello, it sounds like your condition is very similar to mine. My pinky started contracting within the last 12 months. I first went and saw a local surgeon recommended by my general practitioner (who correctly diagnosed my condition). The surgeon offered that traditional surgery was really the only effective treatment, although she was upfront that there is no cure and it often reoccurs, usually in a different finger. I scheduled my surgery, then talked to a couple of people who had the disease and had family with it. After their stories of no long term relief from surgery, I cancelled my surgery and i began to explore other options. I also have the fortune of being friends with a plastic surgeon no longer working as a surgeon, who knows alot about DD. I went to another local plastic surgeon who was on the Xiaflex website as doing injections. He told me i was not a candidate for Xiaflex because of the risk to my tendon. he is a plastic surgeon who does not do NA and no longer administers Xiaflex because of a previous case that went really badly. I then went and saw a hand surgeon in a nearby large metropolitan area. He does Xiaflex, NA and traditional surgery. He said he would have no hesitation in doing Xiaflex because my cord is on the side of my finger and he is confident he can stay away from the tendon. He indicated that he believes the reoccurrence rate with NA is about 65% within 5 years, but it is the safest procedure and much less invasive than surgery. He said the reoccurrence rate with Xiaflex is 35-40%, but there is a risk of complications, like dissolving the tendon by mistake. He said about 55-60% of his patients opt for Xiaflex, 30% opt for NA and about 10% or less elect surgery. He said the trend is towards xiaflex, and he said he has treated 300-400 patients with Xiaflex and has not had any serious complications. So, Here are my conclusions so far:

1. Seek out a provider who offers all 3 options if possible. They will be the least bias towards any one remedy. Dont be afraid to travel if you can afford it, and seek out several opinions.
2. Many surgeons who perform hand surgery are plastic surgeons and do many other types of procedures. My friend has advised me to use a HAND specialist, not a general plastic surgeon if possible. The hand is a very tricky part of the body and needs special expertise. Whether it is NA, Xiaflex or traditional surgery, it sounds like the skill of the provider can definitely make a difference.
3. I have tried to educate myself by reading the studies and literature. From those articles, I was able to find doctors who are plugged into DD research in my general geographic area (West Coast). Many are mentioned on this forum.
4. I am trying to develop a long term strategy, understanding there is no cure, and the likelihood is it will develop in other fingers over the next several years. Doing nothing is not an option for me. I am planning on being proactive. Even if one of these procedures gives me 3 years of relief, research and medical techniques will be that much better for the next go around.
5. I am leaning towards starting with Xiaflex. I may decide the risk of complications is worth the lower percentage of reoccurence. I am still considering NA as well. I have ruled out surgery for the time being. I am not currently considering Radiation until there is better research on the risks of secondary cancers and better correlation to long term positive results.
6. I have also considered acupuncture and massage therapy, but oddly enough, these are not covered by insurance so it would be a lot more expensive for me.
Best of luck to you as you proceed.

05/08/2017 05:30
wach 

Administrator

05/08/2017 05:30
wach 

Administrator

Re: Xiaflex?

Hi Peter,
that's great post and there is nothing to add, except a few comments to complete maybe the picture:

1. Recently the first results of two studies comparing Xiaflex and NA have been published (and both received the International Dupuytren Award). These studies are
Joakim Strömberg et al. "Comparison of Treatment Outcome After Collagenase and Needle Fasciotomy for Dupuytren Contracture: A Randomized, Single-Blinded, Clinical Trial With a 1-Year Follow-up" and
Peter Scherman, Per Jenmalm, Lars Dahlin "One-year results of needle fasciotomy and collagenase injection in treatment of Dupuytren’s contracture: A two-centre prospective randomized clinical trial" http://www.dupuytren-online.info/dupuytren_award.html .
Both studies find very similar results and no significant difference between Xiaflex and NA with respect to effectiveness and to recurrence. I would think that overall collagenase (Xiaflex) and needle fasciotomy (NA) are pretty much equally effective. In specific situations one might be better suited than the other. Differences are also in immediuate side effects and how to apply it.

2. With respect to massaging you might have someone show it to you and then do the massaging yourself, daily over a longer period of time (6 months?). That would be the easiest and cheapest way. The most recent post on this is http://www.dupuytren-online.info/Forum_E...nts-0_2284.html .

3. You might consider including radiotherapy in your overall picture. It won't help for already contracted fingers but it is quite efficient when you are getting new nodules http://www.dupuytren-online.info/radiation_therapy.html. I myself had a nodule irradiated 35 years ago and it never came back and 5 others about 20 years ago and they either vanished or did not progress since then.

4. Surgery is still a good option because it has less recurrence and in some cases it might even be the only option. But it is definitely worth looking for a very experienced and good hand surgeon and not someone just claiming he can do it. The hand is indeed a very delicate structure and once damaged it will not become the same again. Unfortunately there are many reports of bad or not required surgeries. As you are writing, a responsible hand surgeon who is familar with all 3 types of treatments would be the best one to advise you. Unfortunately those are hard to find and even harder to find a surgeon also is familiar with radiotherapy.

Wolfgang

peterinusa:
...
1. Seek out a provider who offers all 3 options if possible. They will be the least bias towards any one remedy. Dont be afraid to travel if you can afford it, and seek out several opinions.
2. Many surgeons who perform hand surgery are plastic surgeons and do many other types of procedures. My friend has advised me to use a HAND specialist, not a general plastic surgeon if possible. The hand is a very tricky part of the body and needs special expertise. Whether it is NA, Xiaflex or traditional surgery, it sounds like the skill of the provider can definitely make a difference.
3. I have tried to educate myself by reading the studies and literature. From those articles, I was able to find doctors who are plugged into DD research in my general geographic area (West Coast). Many are mentioned on this forum.
4. I am trying to develop a long term strategy, understanding there is no cure, and the likelihood is it will develop in other fingers over the next several years. Doing nothing is not an option for me. I am planning on being proactive. Even if one of these procedures gives me 3 years of relief, research and medical techniques will be that much better for the next go around.
5. I am leaning towards starting with Xiaflex. I may decide the risk of complications is worth the lower percentage of reoccurence. I am still considering NA as well. I have ruled out surgery for the time being. I am not currently considering Radiation until there is better research on the risks of secondary cancers and better correlation to long term positive results.
6. I have also considered acupuncture and massage therapy, but oddly enough, these are not covered by insurance so it would be a lot more expensive for me.
Best of luck to you as you proceed.


Edited 05/08/17 08:36

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