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Visiting Robert Carr's Shares (account name: robert)
 
 Dupuytren's Disease - or call me 'hook finger'
  (Hand tendon pain, hand lumps, hand cords, hand pits, Dupuytren, curving fingers, curved fingers, hand therapy, dupytren's contracture)

September, 2009 update

I'll start off with the really good news.  I just visited the Auxilium website and read the Auxilium Sept 3rd press release on the latest results of the clinical trials of their very promising new Dupuytren's drug.   New England Journal of medicine published, on that same day, the latest results.  These new results look to my layman's eye to be A+ promising.  Injections with XIAFLEX(TM) seem to help quite a bit or dramatically with almost all contracture cords, with very mild side effects, if any.  And the results show up within 30 days.

I'm glad to hear this because my left pinky contracture is slowly but steadily getting stiffer, bending in a bit more, and getting more painful.   I'll keep my other fingers crossed that the FDA approves XIAFLEX within the next year or so.   If you have Dupuytren's, keep you eye on this treatment!


June, 2009 update

Here's a bit of an update on my Dupuytren's Disease.  The disease seems completely stable in my right hand.  In my left hand, the left pinky is steadily getting worse.  When I try to hold all my fingers perfectly straight, in February I would have guessed the left pinky was bent in at a 5% angle in from straight (0% would be perfectly straight), now it's ~10%.  The palm bump and the cords extending into the pinky are increasingly looking red and angry and inflamed almost all the time.   I can no longer really hold my left hand flat against table top, the first pinky joint is elevated and I have pain because the pinky will not lie flat.  I can now see that my first real loss of function will be the inability to do push ups with my hand flat against the floor!  

Happily I still have almost no loss of function.    When I've played the piano even my left pinky performs well.  The piano teacher always told me to curve my fingers!  But I worry that as the finger curls in more I will have loss of function and find myself not using it.  But it's interesting, one of the main functions of a hand is to grasp, and the Dupuytren's fingers curve in, but that is a grasping position.   So, outside of piano playing probably being difficult for a very curved finger, I'm not sure what else will be lost.

Where I wrote below there is no pain, over the last months I would say I experience  'soreness' and 'ache' pain  a number of times a day in the left pinky.  I have a bruised soreness kind of spot in my left palm now below my middle finger, so I think this is early stage of a palm bump at the base of the middle finger.  I can see a slight bump developing there.  I hope it turns out to be benign and stable like the right hand middle finger bump.   The pain can be sharpest in the morning, in bed, when I first wake up, my left pinky is very stiff and sore, presumably from inactivity during the night.   Perhaps this is a sign that stretching and activity keeps it loose and limber during the day.

I am moderately compulsive about rubbing the knots in my hands...  especially when driving, because the way the hand wraps around the steering wheel the palm knots are worked and rubbe.   Rubbing the knots  kind of feels good the way sore muscles feel good when you massage them.  But it's partly compulsive in a negative psychological sense, because I like to feel them and see what's going on and feel sorry for myself.  I'm trying to make this into an asset, by saying a prayer of thanks whenever I notice the knots or soreness, because this is such a minor affliction, and also I have so much to be thankful for.

Interestingly, I've noticed a deep sore spot in my left foot, about where the 'palm' of the foot is behind the middle toes.  I wonder if this could be a Dupuytren's knot developing.  I'll have to research if it can affect the feet.   It seems very similar to the way the new left hand middle finger palm knot first felt.


February, 2009

Here is the story of how 1 of my fingers has started curling inward and what I learned about it today.  I'm writing this so family relatives (and anyone else on the web) can learn, in case they ever encounter the same genetic-based disease.

At about 5 years ago (at age 48) I developed fibrous bumps or nodules in both of my palms.   On the left hand the bump is at the base of my pinky finger, and on the right hand at the base of my middle finger.   The right hand bump has stayed stable and small, but the left hand pinky bump has been progressing, getting larger and extending into the pinky - in just this last year the base segment of my pinky is getting fibrous as well and the pinky is stiffening slightly so that it no longer can extend staight and flat when I rest the hand on the table.   There has been no pain.

When I queried my parents last year (82 years old), they both turned their hands over  showed me similar bumps on their hand palms.  It was very striking!  Happily, they reported that they have not had finger stiffness of any kind.

Although my hand condition is not painful and so far is not inhibiting any activities, I thought it would be good to try to figure out what is going on, since my left pinky is beginning to stiffen and curve in slightly.  My wonderful general M.D. could not diagnose the condition but (as she always does) gave me a wonderful referral,  to Dr. Bickel, a top hand surgeon who teaches at U.C.S.F.

This morning he immediately diagnosed me as having Dupuytren's Disease (here is an excellent 1 page summary and here is wikipedia on Dupuytren's Contracture). He pointed out how my right ring finger has a 'knuckle pad', which is another symptom in addition to the palm knots. 

Dupuytren's is a genetic disease with no known treatment to cure it.  Collagenenous lumps develop in the palm and, in some cases, over time develop in a cord-like fashoin from the palm into the finger, causing the finger to curl inwards and loose mobility.   The cords are on the fascia, between the tendons and the skin.  My own mental analogy is to think of puppet strings developing under my skin, pulling my pinky in.   Call me 'hook finger'.  :-)

Onset of the disease has nothing to do with physical trauma, or work conditions etc.  (I had wondered if my increased cycling and computer usage about 5 years ago had anything to do with the fibrous knots - he said 'definitively not').

He said that there is no predicting the progression - some fingers may progress to be severely bent, other lumps may stay entirely benign (as my parents' have).   Some generations (e.g., my parents) may be entirely benign, and their child might have a more severe progression (as it appears I might be having in my pinky).    I remember my Dad's Mom (dear Anne Carr) having curled-in fingers, but I think her problem was arthritis.  I'll ask him and update these notes.

If a Dupuytren's finger does progress to the point of severe bending (i.e., real impairment), then surgery can be performed,  He smiled and says he likes the surgery because it's very complicated and very interesting to perform.  Oh oh, I don't like it when a surgeon says that!  But he continued to say the surgery does not cure the underlying condition and after you go through surgery the condition can recur in the same finger.  Rehab from the surgery is multiple months of splints and rehab etc.  So surgery is an extreme step and happily I don't seem any where close to needing to consider surgery at this time.

He said that there is no treatment to cure the condition.  As described in the previous paragraph surgey can help, but possibly just for a while.  Other treatments such as stretching, massage, ultra sound, cortison etc. - they do not help the condition.   Some people have worn splints to straighten their finger for many many hours a day and this does straighten the finger, but as soon as they stop wearing the splints, the finger curls again!   These are good puppet strings apparently.

Note:  I did find this Needle Aponevrotomy website by a Boise, ID surgeon who suffered from Dupuytren's, received Needle Aponevrotomy (NA) in France, found it worked, and went on to be trained in it and now offers it here in the U.S.

But Wait, There's Something Just Over the Horizen!
Then he shared some hopeful news that there does appear to be a very promising new treatment in clinical trials that might be commercially available within a few years.  It is an injectable enzyme that dissolves the collagenous nodules and cords.  The treatment has already passed Phase I & Phase II tests with the FDA.  He gave me a copy of an academic paper in the Journal of Hand Surgery about the new treatment (I like this doctor!).

The paper is titled 'Efficacy and Safety of Injectable Mixed Collagenase Subtypes in the Treatment of Dupuytren's Contracture.'   Say that fast for 3 times in a row.  Good job!   The paper documents how the treatment worked in 21 of 23 patients who received 3 injections.  Fingers returns to less than a 5 degree contracture (sounds almost straight to me).   

A company called 'Auxilium' (stock: AUXL) is developing the treatment, and here is what their web page says after initial Phase III results:

Dupuytren’s contracture is a condition that affects the connective tissue that lies beneath the skin in the palm of the hand. The disease is progressive in nature. First, painful nodules develop in the palm as collagen deposits accumulate. As with typical disease progression, the collagen deposits form a cord that stretches from the palm of the hand to a joint on the finger. Once this cord develops, a Dupuytren’s patient’s finger or fingers contract and the function of the hand is impaired. The most frequently affected joints are the metacarpophalangeal joint (MP joint), which is the joint closest to the palm of the hand, and the proximal interphalangeal joint (PIP joint), which is the middle joint in the finger. The little finger and ring finger are most frequently involved. Surgery is the only treatment proven effective at present; however, there exists the possibility for a prolonged recovery period and high recurrence rates.

The incidence of Dupuytren's contracture is highest in Caucasians, historically those of Northern European descent. Most cases of Dupuytren's contracture occur in men older than 50 years, and the incidence increases with age. It is common for the disease to affect both hands, and recurrence of disease is common once treated surgically. Xiaflex is injected intralesionally into the affected area in an in-office procedure to soften and ultimately lyse the cord.

Clinical Trial Results

The first phase III study, sponsored and monitored by BioSpecifics Technologies Corp., licensor of Xiaflex, with follow up and data analysis conducted by Auxilium, showed promising results. The trial involved a total of 35 patients, 23 of whom were randomized to receive up to three injections of Xiaflex and 12 patients who were randomized to receive placebo. Xiaflex achieved a 91% success rate for the primary endpoint of less than 5° of contracture in treated joints, including both PIP joints and MP joints, after up to three injections. The placebo group had a 0% response rate (P < 0.001). The mean number of injections per joint was 1.4. The results observed after a single injection of Xiaflex showed that 70% of subjects achieved therapeutic success (contracture reduced to 5° or less); no patients responded to placebo (P < 0.001). These phase III results were consistent with those from a phase II study published in The Journal of Hand Surgery (2002;27A:788-798).


Why me? Or how the Vikings grabbed their swords so well their grip would never let go.  Here is what wikipedia says on who tends to get Dupuytren's:
  • People of Scandinavian or Northern European ancestry; it has been called the "Viking disease", though it is also widespread in some Mediterranean countries (e.g. Spain and Bosnia) and in Japan.
  • Men rather than women (men are ten times as likely to develop the condition)
  • People over the age of 40, and
  • People with a family history (60 to 70% of those afflicted have a genetic predisposition to Dupuytren's contracture)
After reading that, I extended the fingers of my hand (as well as I could!) and counted:  1) I have a family history and 2) my grandmother (my Mother's Mother) was born in Norway. 3) I'm male and 4) I'm over 40 and 5) all my other ancestry is from Northern Europe.  I could be a poster child!

What next:  First,  I've been wanting to seriously take the piano up again for many years.  I have a beautiful piano.  I'm going to start playing it right now and stop putting it off, because there's a chance my fingers won't support piano playing at some later time.   Second, I'll buy some stock in Auxilium and cheer them on from the sidelines.   Oh, lastly, I'll be sure to occasionally curl up with an issue of Journal of Hand Surgery and have a good read!


Creation date: Feb 2, 2009 11:57 am     Last modified date: Nov 8, 2009 5:51 pm   Last visit date: Sep 29, 2016 4:17 am     link & embed ?...
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Feb 18, 2009  ( 1 comment )  
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Sep 14, 2009  ( 1 comment )  
9/14/2009
9:07 am
    
Richard Carr (richard)
Sorry about the left pinky.  Hope FDA approves XIAFLEX quickly!
Sep 15, 2009  ( 1 comment )  
9/15/2009
3:48 pm
    
Julie Carr (beekielou)
Sorry to hear about your painful left pinky - Praying that the FDA approves XIAFLEX soon, so you and others suffering with this get some help in stopping it.
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