/ Dupuytrenís Contracture: treatment by Xiapex (Xiaflex)

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Carless - on 18 Nov 2013
(Posting this in ROCKTALK as many donít read Off Belay, etc. Feel free to move if appropriate)


Nearly 2 weeks ago I had treatment for Dupuytrenís contracture in the small finger using the collagenase Xiapex (called Xiaflex in the US)

Hereís a description of the procedure: http://www.dupuytrens-society.org/Collagenase.html

My experience is that the treatment is trivial: a trip to the clinic in the morning; a discussion with the doctor (I must have asked him several times if he was totally sure the tendon would not be affected) followed by 2 small (though surprisingly uncomfortable) injections of Xiapex into the Dupuytren cord (this caused swelling in the base of the finger and minor pain in the arm for the rest of the day)

I went back the following day to have the cord broken. Had a local anaesthetic and 5 minutes later the doctor manipulated the finger and the cord broke with an audible snap
The difference was noticeable immediately but the base of the finger heavily swollen
Had to wear a finger splint to get the finger used to being straighter again, but the splint is not worn permanently as I have to take it off regularly to move the finger

12 days later itís still a bit swollen but a 40 degree bend has been reduced to 5 degrees

Iím not sure of the availability of this treatment on the NHS (Iím in Belgium), but from my experience Iíd say itís well worth considering


I havenít climbed yet, so Iíll comment on here when I have - the doctor said the swelling should have gone by 3 weeks after the injection, so Iíll probably go down the wall next week

Hereís a link to PODís 2010 article about surgery where he mentions Xiaflex near the end
http://www.ukclimbing.com/articles/page.php?id=1312
Richard Alderton - on 18 Nov 2013
In reply to Carless:

Thanks for the post. Looks promising. I'd be very interested to see how this progresses for you. It sounds like you already had quite advanced contracture.

I've just got the characteristic lumps in the palms so far, but based on my Dad & Granddad's experience, I know what to expect. I'd rather get something done sooner rather than later, as it's already getting painful to climb on.
Jon Didymus - on 18 Nov 2013
In reply to Carless:

Yes, thank you for sharing this and wishing you well for your recovery.
Interested to know if you think climbing has contributed to the condition?
Dave Garnett - on 18 Nov 2013
In reply to Carless:

Had you had previous treatment for your contracture? I've had recent advice from a specialist on this and his usual practice was needle aponeurotomy as a first step (highly effective but 50% recurrence rate), collagenase as the second intervention (effective but longer recovery period, swelling, pain and a small risk of injecting collagenase into the tendon - possibly leading to a rupture). Third option is open surgery to remove the scarred fascia, but that means extensive suturing, splinting and probably out of action for 3 months.

I have about the same degree of flexure as you had and I'm due for a needle aponeurotomy next week - I've already asked about the risk for the tendon about 5 times. I'm glad you described your procedure as trivial. I thought so too when I agreed to it, but it's starting to seem less trivial the closer it gets!
jon on 18 Nov 2013
In reply to Jon Didymus:
> (In reply to Carless)
>
> Interested to know if you think climbing has contributed to the condition?

Margaret Thatcher was convinced that hard bouldering was the cause of hers.

Dave Garnett - on 18 Nov 2013
In reply to Jon Didymus:
> (In reply to Carless)
> Interested to know if you think climbing has contributed to the condition?

My consultant said it was common in climbers in his experience (he's in Derby, so that might skew things a bit) and that this was logical given the stress and damage inflicted.
HB1 - on 18 Nov 2013
In reply to Dave Garnett: interested to hear that you're having NA in Derby - is that with Mr B by any chance? I go to him every couple of years or so (I'm due to go again quite soon)He does a good job! He thinks climbers are tough, and so don't suffer too much from the treatment (not that it hurts)
Mark Bull - on 18 Nov 2013
In reply to Carless:

That's very interesting, thank you! I hope you get a good result from the treatment.

I have a contracture in the PIP and DIP joints only which is a little inconvenient but not painful, and has not progressed for several years, so I'm reluctant to take the risk of treatment. I'm strongly convinced climbing was the cause, though, as progressions in the contracture followed soon after (relatively minor) traumas from pulling on sharp holds. I did manage to snap the cord once by pulling hard on a hold, but the contracture reformed within a couple of months.
Dave Garnett - on 18 Nov 2013
In reply to HB1:

Mr B indeed. I understand he's the man for this kind of thing and was recommended by both climbing and medical friends. On the other hand (as it were), I don't take the prospect of having bits of my finger severed with needles lightly!

Bulls Crack - on 18 Nov 2013
In reply to Dave Garnett:

I understand that there a Belgian surgeon in Halifax who's good at this stuff too - unless its the same chap?
Dave Garnett - on 18 Nov 2013
In reply to Bulls Crack:

Don't think there's anything Belgian about Mr B!
Dave - on 18 Nov 2013
In reply to Carless:

Thats very interesting. About two weeks ago I had Xiapex treatment of a contraction in my left little finger. It was a complete failure. I had three injections in the cord, next day the surgeon tried to break the cord, even asking me to heave on my finger, but with no success. Another visit the next day for another breaking session, to give the collagenase more time to work, was also unsuccessful. Now debating whether to give it another go which apparently I can do. I found the injections in the palm particularly unpleasant and so its not a welcome prospect, but maybe its worth a try. Happy to hear yours worked.

I believe the link with climbing is still unsubstantiated, but it is tempting to think that there might be one as it does seem to come up on UKC as a topic quite often.
Richard Alderton - on 18 Nov 2013
Who is this mysterious Mr B?!

Can somebody pass his details please.

Is he NHS or private?

Cheers,
Dave Garnett - on 18 Nov 2013
In reply to Richard Alderton:

yhm
Dispater on 18 Nov 2013
In reply to Carless:

Interesting, thanks.
I'm showing early signs off this in the outside three fingers of both hands, at 45.
Always worse in the morning.
:(
Dispater on 18 Nov 2013
In reply to Dispater:

Of, not off!
duncan - on 18 Nov 2013
In reply to Carless:

Thanks for posting this.

I wouldn't try collagenase injections myself at this point. Tendons are made of collagen and are close to the Dupuytren's cords. I'm sure Xiaflex has been thoroughly tested but probably not that much in climbers. Minor damage to the tendon might not be noticed in most people but for a climber it might be disastrous. I'm pretty sure I'm being over-cautious but, given there are procedures with well-established safety and effectiveness I prefer to let others try first. Thanks Jon!

As a matter of interest, do you take or have taken Glucosamine?
HB1 - on 18 Nov 2013
In reply to Dave Garnett:
> (In reply to Richard Alderton)
>
> yhm . . .

. . . yes. Best not to tell everyone! I understand that POD contacted him, but not until after he'd had the op. I did have the op on one hand some years ago , and it's worked well, and I would have had the other hand done, but the surgeon has returned to Spain, and I didn't trust his successor. As I've said here before Derby is more convenient than Paris (the home of NA treatment) but not so much fun!

Dispater on 18 Nov 2013
In reply to duncan:

There's growing evidence in the literature that glucosamine is no more effective than placebo.
duncan - on 18 Nov 2013
In reply to Dispater:

> There's growing evidence in the literature that glucosamine is no more effective than placebo.

I suggested as much in 2007 when glucosomine was still all the rage: http://www.ukclimbing.com/forums/t.php?t=250215&v=1#x3685969

My interest is whether Dupuytren's is associated with taking glucosomine. Anecdote suggests it might be: http://www.arthritisresearchuk.org/arthritis-information/q-and-a/complementary-therapies-and-supplem...
ads.ukclimbing.com
Dispater on 18 Nov 2013
In reply to duncan:

Bloody hell! Never heard that.

I've never touched the stuff, and I'm succumbing to Duypuytren's. So someone somewhere can add my data to their meta analysis. :)
Dave - on 19 Nov 2013
In reply to duncan:

> I wouldn't try collagenase injections myself at this point. Tendons are made of collagen and are close to the Dupuytren's cords. I'm sure Xiaflex has been thoroughly tested but probably not that much in climbers. Minor damage to the tendon might not be noticed in most people but for a climber it might be disastrous. I'm pretty sure I'm being over-cautious but, given there are procedures with well-established safety and effectiveness I prefer to let others

I discussed this quite extensively with the hand surgeon who did my Xiaflex collagenase injection who reassured me that the tendons are sufficiently far away from the cords that the chances of the collagenase getting there are remote, especially when the procedure is performed correctly. They have to attend some training before being allowed to carry out the procedure.

jazzyjackson on 19 Nov 2013
In reply to Carless:
Thanks for posting. v interesting! Good luck with recovery.
control freak on 19 Nov 2013
In reply to Carless: A lot of people sound like they have seen consultants of one form or another. I can't get an NHS referral until my 'hand doesn't lie flat on the table any more'* (Not complaining about that as I'm fully aware that I'm not a priority) so I would be interested in seeing someone and discussing early stage treatments if appropriate - does anyone know of a Yorkshire based consultant I could see privately?

*Mine is beyond the lump stage as has a 'dimple' where the tendon pulls the skin/flesh down but has no bend yet. However, it hurts a lot when I climb/type/carry stuff and I don't want to end up like my Mum who has had about 5 open ops.
armus on 19 Nov 2013
In reply to Carless: You may find this interesting. Prof. McGrouther is now in Manchester I believe.

http://www.ukclimbing.com/forums/t.php?t=323767
Carless - on 19 Nov 2013
Hereís an attempt to reply to the points in order

My contracture has been around for several years but itís only in the past 2 years that it progressed to about 40 degrees

It was very rarely painful which is part of the reason I never sought treatment before. I fact I only decided to see a doctor because of a climbing trip on Cham granite where I noticed getting all fingers into a thin crack was becoming more difficult

I think climbing definitely aggravates the condition, but does it cause it?
As far as I know, juryís still out, but there seems to be a higher incidence among climbers
For me, itís clearly genetic Ė my paternal grandfather had both little fingers amputated, and my father suffered to a minor extent
My 2 brothers & sister (all older than me) show no sign of itÖ

I considered the NA treatment but the doctor here said the Xiapex treatment is perfectly safe Ė he had a 100% success rate. I asked him how many times heíd done and he replied once Ė I thought I like him already ;-) He then confirmed heís done it at least 50 times

I quizzed him several times about the risk to the tendon and he explained that they can only do the Xiapex treatment if the cord is clearly palpable. If it is thereís very little risk of any of the Xiapex affecting the tendon

He said the cord will almost certainly reform but this might not be for years

Dave Ė sorry to hear yours didnít work
I'll probably have the other hand done soon

The injections in the base of the finger were surprisingly unpleasant Ė I didnít expect that at all (injections donít normally bother me at all), but the doctor pointed out the palm is crammed full of nerve endings

I tried taking Glucosamine about 2-3 years ago and it was noticeable that it coincided with the cords getting bigger, but I couldnít say that caused it
Dave Garnett - on 19 Nov 2013
In reply to Carless:

>
> I tried taking Glucosamine about 2-3 years ago and it was noticeable that it coincided with the cords getting bigger, but I couldnít say that caused it

I think it's highly plausible that lots of low level trauma over many years might cause Dupuytren's, or at least accelerate it, in someone with the right genetic background.

As for glucosamine, for now I think it more likely that the sort of people giving themselves DC by stressing their fingers might also have the sort of tweaks and pains that cause such people to take glucosamine, rather than there being a causative link.

sarahlizzy - on 19 Nov 2013
In reply to Carless:

Interestring thread. I developed my first nodules at age 38. I'm now 40, and I've had radiotherapy in my right hand (finished in July). The results were very promising at first, but it's started to flare again, albeit not as severe as before. I suspect collagenase is in my future.

More worryingly, my right foot is starting to show signs of the disease :-/
Jon Didymus - on 19 Nov 2013
In reply to control freak:

With regard to early stage treatments, has anyone noticed anything that helps eg finger stretching or stopping climbing (drastic I know!)?
Dave Garnett - on 19 Nov 2013
In reply to Jon Didymus:

I asked about splinting but the answer was that it wasn't very effective. I have to say that this doesn't strike me as vary rational. Surely once I have my finger straight(-ish) wearing a splint at night must prevent it relaxing into a flexed position, allowing tethering by fibrosis? I'll tackle this again at my next appointment.
sarahlizzy - on 19 Nov 2013
In reply to Dave Garnett:

There are clinical studies which show that splinting is more or less useless. Radiotherapy, even if it didn't stop it dead in my case, stopped the damned itching (fellow Dupuytrens sufferers know what I mean), and gave me some extension back, but it noticeably aged the skin.

I wore a splint for a bit. It just made it hard to sleep, and gave me stiff fingers.
Dave Garnett - on 20 Nov 2013
In reply to sarahlizzy:

To be honest, I would take some convincing to have radiotherapy as adjunct therapy for something as benign as this.
jazzyjackson on 20 Nov 2013
In reply to Dave Garnett:
> (In reply to sarahlizzy)
>
> To be honest, I would take some convincing to have radiotherapy as adjunct therapy for something as benign as this.

+1
Radiotherapy is overkill! It's a ridiculous treatment for a benign nuisance. No way I would consider it.

El Greyo - on 20 Nov 2013
I have had a Dupuytrens lump on my left palm for at least seven years. Initially it was a lump on the little finger tendon and started after I'd been taking glucosamine for a few months, the only period in my life that I have taken glucosamine. When researching dupuytrens I found the speculation about links to glucosamine so I stopped taking it. I don't know whether there is a link but I'm not going to take glucosamine again. My family has no history of dupuytrens and I haven't developed a lump anywhere else.

The lump has now spread out cords and seems to be spreading to the ring finger tendon. I haven't had any contracture yet. I do stretch it; pretty much everyday. I'm quite aggressive with the stretching and sometimes I get a sharp pain from either the lump or down in the wrist. But if I ignore the pain and keep stretching it subsides and subsequent stretching the same day is not painful. So I'm hoping I'm keeping the contracture at bay by stretching regularly and I'd be interested to hear whether anyone else has found regular stretching has helped. I've never worn a splint at night.

Dave Garnett - on 20 Nov 2013
In reply to jazzyjackson:
> (In reply to Dave Garnett)
> [...]
>
> +1
> Radiotherapy is overkill! It's a ridiculous treatment for a benign nuisance. No way I would consider it.

Well, it's sometimes more than a nuisance and the radiotherapy must be pretty light and the risk/benefit analysis must have been carefully considered with responsible clinicians feeling that it's justifiable but, as I say, personally, I'd need some convincing.
SteveSBlake - on 20 Nov 2013
In reply to El Greyo:

I've been taking Glucosamine since about 91, but have been climbing since 1967.

I may, may, have a thickening chord on my left hand pinky, but it may turn out to be nothing.

If there was a link between Glucosamine and Duputren's I'd imagine I'm a strong candidate. But I'm far from convinced....

Steve
mav - on 20 Nov 2013
I've had the nodules, the thickening tendons, and yes, the itching for about 7(?) years in the outer tendon on both hands. Thankfully no contracture. It's not worsened for the last couple of years, thankfully. I'm 40 now, so as relatively young (33?) when I first developed it.

I hadn't heard the glucasomine link until today. I've been climbing for getting towards 20 years, and damaged a ligament in my middle finger, which remains weak today. About 9 years ago I was told glucasomine could help my middle finger, so started taking it to see. 2 or 3 years ago, for no particular reason, I stopped. So, the timings fit, I guess. It starts two years after I commence glucasomine, stops worsening when I stop teh glucasomine. Though that could be a coincidence, it'll probably stop me from re-starting the glucesomine habit for now.

(nb I can be reasonable certain about the timings above because of the way they fit around various other life events, marriage, kids etc)
sarahlizzy - on 20 Nov 2013
In reply to jazzyjackson:
> (In reply to Dave Garnett)
> [...]
>
> +1
> Radiotherapy is overkill! It's a ridiculous treatment for a benign nuisance. No way I would consider it.

Aggressive Dupuytrens and Lederhose can lead to amputation and disability. Radiotherapy for them has been shown to be effective and quite safe (as my consultant explained to me, there is no bone marrow in the hand, and the dose is quite superficial), and can buy a considerable amount of time by slowing the progression of the disease considerably.
teapot - on 22 Nov 2013
In reply to Carless:

I have had it in both hands for over 10 years. Fortunately so far i have not suffered contracture during the day, however very occasionally I wake at night with one hand in contracture. This has probably happened half a dozen times a year for the last 5 years. A little massage makes it go within minutes. These incidents tend to correspond with periods of high intensity fingery climbing/training and are not increasing in frequency

Does anyone else suffer from these night time onsets?

I expect eventually I will get them in the daytime too. I can however lie both hands flat on a table so it appears I would not fit the criteria for seeing a consultant.

codramble - on 23 Nov 2013
In reply to Carless:

Link to the Cochrane Database (premier source of evidence for treatments):
collagenase: http://onlinelibrary.wiley.com/cochranelibrary/search . A couple of trials ar reported.

Needle Fasciotomy worked for me and by the sound of it was less painful with less side effects. Cochrane protocol: http://onlinelibrary.wiley.com/cochranelibrary/search
Plenty of experience in the procedure is necessary to ensure a successful outcome IMO. Your GP will hopefully be able to find the relevant consultant hand surgeon.
There is also a protocol there concerning evidence for splints etc.

taddersandbadger - on 23 Nov 2013
In reply to Carless:
Thanks to the OP and the various contributors for a very interesting post. I am 41, have been climbing pretty regularly for the last 8 years, on rock, chalk and ice, so a mix of normal climbing and having my hands wrapped around the grips of my Nomics (other brands are available!) and last year while out ice climbing in France we realised that four of the eight of us on the trip were all affected to some degree, but none to the extent where we could not straighten our finger(s) fully.
As I work with my hands I did some home work and ended up going private to go and see a specialist for some advice. This is what he said:
It is a very much a genetic condition and so this is what determines if you will have it and how fast it will progress , so according to him, what you do (climb or not, climb a little or climb a lot, week end warrior or rock legend) has little or no bearing. Interestingly he said that there is apparently a strong link to Viking ancestry, so get Grandma to talk you through the family tree. It would figure that the Viking gene is well represented amongst climbers as we are supposedly less averse to risk and able to manage it, plus drawn to adventure , the unknown, pushing the envelope etc.

Further to this, as it is your genes that dictate, trying to stretch it or splint it will make no difference to your progression, so don't bother.

In terms of deciding when to intervene, his nugget of truth was to wait until the contracture progressed to such a degree that it became apparent to you during every day tasks like your pinkie finger catching when you put your hands in your pockets or you finding that you inadvertently poke your self in the eye when you comb your hair (not likely to be a problem for me then having very little hair left on my head!)

Treatment wise, he reported that in the last five years he had done a "few hundred" cases and only 2 were full surgical excisions, the bulk were needle aperneurotomies and in the last two years 99% were collagenase. He did point out the risk of injection into the tendons (damage or rupture) plus said it is quite painful but is still the treatment of choice if done correctly as it has the best outcome in terms of healing and the lowest recurrence rate. So choose your surgeon wisely and find somebody that has done the procedure many times and has a high success rate.

He said I would be back within 5 years for surgery, so for now, I am climbing as much as I can and keeping my hands out my pockets :))

Now has anyone got any pearls of wisdom for my nagging rotator cuff injury ??? ;)
Coel Hellier - on 25 Nov 2013
In reply to taddersandbadger:

> It is a very much a genetic condition and so this is what determines if you will have it and how fast
> it will progress , so according to him, what you do (climb or not, climb a little or climb a lot, week end
> warrior or rock legend) has little or no bearing.

I think that more likely it is both, having both a strong genetic component and being related to use (there is evidence from a Climbers' Club survey of it being more prevalent among long-term climbers).
jazzyjackson on 25 Nov 2013
In reply to taddersandbadger:

I think due to its benign nature theres very little research and study into the condition.
I personally find the viking ancestry and alcoholism causes a little hard to swallow.
Chris the Tall - on 25 Nov 2013
In reply to Carless:

> Here’s a link to POD’s 2010 article about surgery where he mentions Xiaflex near the end


PODs article first appeared in 2008, and coincided with me realising I had the condition - nodules on the palms. It also coincided with me climbing more often than ever before, and taking Glucosamine for 3 or 4 months.

After comments on here I stopped taking the latter and it has to be said that it hasn't got any worse. In fact it currently seems to be getting better - I'm sure the nodules are a lot less pronounced than they were. I suppose that could be partly due to me doing significantly less climbing, but having substituted mountain biking my hands aren't exactly getting a rest.
Boy - on 25 Nov 2013
In reply to Carless:

I had the NA treatment on both hands about two years ago. It was a complete success, was very low stress and I was climbing again in days. Hands still flat and fingers crossed and (touch wood) it'll be a while before I have to go back for another treatment.
I was offered Xiapex but decided to go for the NA instead on the basis that Xiapex was a very new procedure in the UK at the time (still is) and the side effects/recovery time are greater. I was also concerned about the risk of damage to tendons. I'm not convinced that people in the drug trials would have been putting their finger tendons through the same stress as a climber and hence that the drug was effectively untrialed for climbers.
Dave Garnett - on 28 Nov 2013
In reply to sarahlizzy:

Just returned from treatment - complete with a splint for night-time use for 4 months. This seemed rather at odds with the previous advice but it turns out that splinting post-surgery (during invitable scarring and tendency for contracture) is useful, but splinting alone doesn't prevent or reverse contractures in the absence of surgery. Makes sense to me.

Anyway, procedure gratifyingly quick and painless with an instant result; completely straight finger - in fact 8 degrees beyond straight.

Amazingly, the next chap in the queue turned out to be the father of a well-known boulderer of this parish!
Morgan Woods - on 13 Dec 2013
In reply to Dave Garnett:

Keep us posted...i seemed to have picked up one of the buggers myself recently :p
Carless - on 17 Dec 2013
In reply to Carless:

Forgot to come back on this earlier

I went climbing approx 3.5 weeks after the procedure - everything was fine

Overall, fairly pleased with the result - completely straight would've been nice, but 5 degrees is a lot better than 40
armus on 23 Dec 2013
In reply to Carless:
You are too afraid of Dupuytrenís Contracture. Many of us have had it. Why don't just stop complaining and behave like a man? It can be fixed. Your thread is becoming like a soap opera.

Andy Nisbet - on 23 Dec 2013
In reply to armus:

> You are too afraid of Dupuytren’s Contracture. Many of us have had it. Why don't just stop complaining and behave like a man? It can be fixed. Your thread is becoming like a soap opera.

Is that a grumpy post?
j0ntyg on 23 Dec 2013
In reply to Andy Nisbet:

> Is that a grumpy post?

I think that it is good advice, the bloke has been complaining for months about something that many others are able to handle without weak panic.
jeremyingham - on 23 Dec 2013
In reply to Carless:

I've had the telltale lumps in my hand for 6 months now. I'm 17 so I seem to be much younger than the typical person with it. It has definitely grown since I first noticed it, there are several lumps now, and my fingers sometimes feel tight. Is there any link between hard climbing in adolescence and dupuytrens's?
Dave Garnett - on 23 Dec 2013
In reply to sarahlizzy:

> I wore a splint for a bit. It just made it hard to sleep, and gave me stiff fingers.

After being something of an advocate for splinting up thread, I gave up after a week or so too for exactly the same reasons.

To be honest, I was pretty much pain-free within a day or so and had a session on the wall after a week without any problems.

Then my son caught me with a kick while demonstrating his TKD sparring and I think I may have cracked the carpal bone attached to the same finger...
hazeysunshine - on 24 Dec 2013
In reply to Coel Hellier:

My consultant (who was black BTW) supported the link to viking genes, and mentioned that it's unknown amongst black populations. I've also heard it referred to as 'viking claw'.

The CC survey is interesting, but it's a bit skewed in that the sample is self-selected - members are more likely to respond to the survey if they have symptoms I'd have thought.
Dave Garnett - on 24 Dec 2013
In reply to Dave Garnett:
> (In reply to sarahlizzy)
>
> Then my son caught me with a kick while demonstrating his TKD sparring and I think I may have cracked the carpal bone attached to the same finger...


Metacarpal I mean. Especially difficult at this festive season as it's most painful when receiving a firm handshake!

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