Interview with Diane from IDS forum, Dupuytren's patient with Xiaflex experience

Today I have an interview with a Dupuytren's patient from the IDS forum. This patient doesn't have a family history of the condition and has had NA and Xiapex. The main reason for this interview was for their experience with Xiapex, in this case it was not a good one.

1)     Do you have Dupuytren's, Ledderhose or both? How long have you had there conditions and what was your age when diagnosed? 

Dupuytren’s only.  It started in one finger on right hand in 1984 when I was 42.  I believe I was always going to get Dupuytren’s but I believe my initial lumps and cord were caused by injuring/aggravating my hand using hand tools to remove tile.  My disease progressed very, very slowly until 2005 when that one finger contracted and I had my first NA procedure.

2)    Where do you live and do you have a family history of the disease?

California and there’s no family history that I am aware of.  I’m of Scots/Polish descent.  I have three younger brothers (age 60 and up) and none has been diagnosed with DD, Ledderhose or Peyronies although one has had frozen shoulder.

3)    Would you consider yourself to be at risk based on any of the other risk factors commonly associated with these conditions?

I don’t understand this question.  I’m really not aware of scientifically proven risk factors.  I know alcohol is sometimes mentioned but I don’t believe there is enough science for an absolute connection.

4)    What treatments have you received for Dupuytren's?

2005- NA on one finger right hand; 2007-Xiaflex in FDA Stage 3 trials—same finger right hand; 2009- 3 separate NA procedures * radiation therapy in both hands—first from one doctor on right hand 2 fingers; then radiation therapy (RT) on right hand; two months later—RT again on right hand and then left hand; Finally, RT on left hand.  I’m about to have NA once more on both hands—3-4 fingers each hand 8 joints or more.  My disease became very, very aggressive after receiving Xiaflex.

5)    How successful were these treatments?

See above—initial NA lasted a little more than 2 years, Xiaflex lasted less than 2 years, 2009 initial NA lasted less than 2 month, 2011 NA lasted 18-20 months—I’m in serious need of another procedure.

6)    If you were to get treated now which treatment option would you take any why?

I am going to get treatment in September and am choosing NA.  I think Xiaflex accelerated my disease, didn’t really work and I’m not yet ready for open hand surgery.

7)    Do you have any other advice you would like to give patients?

Make sure when you get your initial diagnosis that it is from a certified hand surgeon who is familiar with ALL the treatments, especially NA and can discuss them with you.  Open hand surgery should NOT be your first approach. Do as much research as you can on your own so you are fully informed of all of your options. Visit the http://www.dupuytren-online.info Website forum and ask questions there. Make sure the doctor you go to for treatment is a certified hand surgeon and has had lots of experience—2-3 years or more- with the protocol you are choosing.  That means not only for NA but especially for Xiaflex—make sure it’s a hand surgeon and not just a doctor “trained” to use Xiaflex.  Try to talk to other patients and get recommendations and referrals.  Try to find patients of the doctor you have chosen and see if you can speak with them.  Realize that not all NA or Xiaflex doctors are the same.  Some are very aggressive and you may have more side effects—swollen fingers, small skin tears,  a week of bandages and be left with more scar tissue because of the aggressive approach.  With other NA doctors you will only have pinprick size holes in your palm/fingers after the procedure and no bandages the following day.  Try to ascertain which approach your doctor uses and make sure you are comfortable with it.  No question is too small or not important enough to ask.

Interview with Dr Keith Denkler

Today I have an interview with a specialist, this is the first time in about a year that I am doing one of these posts but hopefully there will be several more of them in the coming weeks as I try to branch out and discuss the treatment options with specialists from around the world. I am quite keen to talk to any specialists in the USA, particularly those doing radiotherapy, this is because I am often asked about them by people e-mailing me and it would be nice to give a good answer. So if you have been treated in the US then please get in touch and if you can let me know who you were treated by and if you have contact details (especially e-mail) please provide them. Thanks. 

Right onto today. I was browsing the web last week looking for a Dr or two to pester about these conditions, I thought it would be great to chat to someone who has done the surgery and I came across the following website with loads of information: 

http://www.plasticsurgerysf.com/dupuytrens/

There is a lot of good information on there so I thought that this person would likely be well informed and was worth contacting, I sent him an e-mail and although he was happy to help he did admit to not having done surgery on many Ledderhose patients but has seen a lot of patients, here are the answers I got. Some are not as detailed as I would like but the professionals are of course very busy so any response for a blog is a great result.

 Dr Keith Denkler  

Profile (from his website): (Information posted with permission from website listed above)

Dr. Denkler has been practising medicine since 1989 in Marin County, California. His practice includes both plastic (aesthetic-cosmetic) and reconstruction surgery. Dr. Denkler has achieved board certification in both plastic and hand surgery and teaches as a Clinical Professor of Surgery at UCSF Medical School. Dr. Denkler is one of the few doctors offering treatment for Dupuytren's contracture using the French needle technique called NA (needle aponeurotomy), a type of subcutaneous fasciotomy Dupuytren's in addition to XIAFLEX™. Dr Denkler is still based in California.

This page may be of interest for Dupuytren's patients: http://www.plasticsurgerysf.com/scrapbook/

Now on to the interview: 

1) How long having you been treating Dupuytren's and Ledderhose disease?  

I have been treating these conditions for almost 25 years.

2) Roughly how many Dupuytren's patients have you treated and how many Ledderhose patients have you treated?

I have treated thousands of patients with Dupuytren contracture and have seen hundreds with Ledderhose.

3) What treatments have you used for these conditions? Would you recommend the treatment and roughly how successful is the treatment for each condition?

 

My treatments are predominately needle and or Xiaflex/Xiapex. I only occasionally do surgery.  Ten years ago I did only surgery, using the wide awake technique which I developed.

https://en.wikipedia.org/wiki/Dupuytren%27s_contracture
For Ledderhose, I occasionally have excised, wide-awake, but scar tissue tends to replace the Ledderhose.  I have done this in about half-dozen patients. 

I have done a few dozen needle aponerutomies for Ledderhose, which can give some improvement in severe cases.
 

I also inject Kenalog(cortisone) which can soften nodules.
 

Xiaflex/Xiapex may have a role, but the it is very tender and sore for some weeks and my experience is limited to a few patients with small doses.  The extra enzyme from the hand can be legally used on the feet.  Otherwise the enzyme is not approved in the USA for Ledderhose.

Mostly I recommend starting with Kenalog injections, then needle, and then perhaps wide awake surgery or enzyme.

There is no optimal treatment.  Freezing (which I don't do) may be beneficial.

4) What would your recommendations be to Dupuytren's and Ledderhose patients and do you have any advice you would like to give?

These are chronic conditions and are managed, not cured.

Keep the treatments simple with needle, or enzyme, or both.  Save surgery (has highest complication rate) for severe cases not amenable to the other treatments.

Overall there are some very interesting points that he makes, in questions 4 he mentioned keeping the treatments simple but he does not mention radiotherapy, in fact it is not mentioned anywhere in his report. It is mentioned, although briefly, on his website that I linked to above. 

It is interesting that the technique of choice in the last 10 years, for Ledderhose at least, has shifted from " Ten years ago I did only surgery," to now "Save surgery for severe cases not amenable to the other treatments." whether this is just because he now does the other treatments or because the optimal treatment path has changed I don't know, of course Xiapex was not available.

 

Interview with Seph, dual Dupuytren's and Ledderhose surgery patient

Today I have an interview with Seph from the IDS forum who kindly agreed to share her experience with these conditions. One of the few Ledderhose surgery patients who has not had a horrific experience. 

1) Do you have Dupuytren's, Ledderhose or both? How long have you had there conditions and what was your age when diagnosed? 

I have Dupuytren's and Ledderhose. Both bilateral. I first developed LD in my left foot in my early teens. I may have been as young as 10 as I'm sure when it first started but I know I was at junior school. Right foot developed LD in my late teens followed by my left hand and then my right hand in my early 30's. I am now 59. It may be worth noting that I did not know what the issue was or that the feet and hand issues were related until it was properly diagnosed when I was 33

2) Where do you live and do you have a family history of the disease?

 

I was born and grew up in New Zealand but have lived in Australia for the past 25 years. My family heritage is a mixture of Welsh and Scottish with a few Englishmen thrown in. Father had what I now know was DD in one hand, one of two brothers has LD in one foot and one of two sisters DD in one hand. I am not aware of any other relatives with the disease but I haven't seen any of my cousins in years so I wouldn't know if they have developed the disease

3) Would you consider yourself to be at risk based on any of the other risk factors commonly associated with these conditions?

 

I drink wine with dinner nearly every day but that doesn't account for the disease starting in junior school. I have some liver damage caused by a bout of Hepatitis A when I was 6/7. I sometimes wonder if this mimicked the effects of alcoholism and acted as the trigger for me. A few years back I developed bilateral frozen shoulder. My father who was skinny developed diabetes in his 60's and my mother who was obese developed it in her 70's. I am a candidate but don't have it yet and am trying to fend it off through an aggressive Gym and sport program (Gym 3-4 times a week with heavy weights plus tennis 3 times per week)

4) What treatments have you received for

a) Dupuytren's

I had surgery on my left hand when I was 35. It should be noted that the DD in my right hand appeared a couple of years after the surgery on my left hand. No signs off DD in my right hand prior to then. I had NA from Dr Badois in Paris on both hands April 2009 and again on my right hand December 2009. Last year I had NA done by Dr Manet-Chopin in Paris on both hand and she will treat my right hand again next month.

b) Ledderhose

Surgery when I was 13/14 since then nothing.

5) How successful were these treatments?

 

Surgery on my foot did not cause me any problems but the disease returned within months with a broader mass and I wonder if it was the trigger for the disease popping up on my left foot. Surgery on my left hand was moderately successful but I wonder if it was the trigger for the disease then popping up on my right hand. Each time I get NA done I seem to get an immediate burst of DD activity then it settles down again so I get it done again where the action starts and I am right then for a couple of years. I am troubled that of late I am developing a lot more nodules on the palms of my hands and I am wondering if this is triggered by the NA

6) You were treated a while ago, if you were to get treated now would you take the same treatment option? And why?

 

If I could return I would not have the surgery and I would not have waited so long before starting NA. The surgery achieved nothing other than a temporary fix with the scar tissue limiting my future options. Because I waited too long NA was not able to straighten my little finger on my right hand and surgery did not straighten it on my left hand

I do not agree with the people that advocate protecting hands and wearing soft shoes etc. I have found that by pushing through the skin toughens and the nodules settle down. On my feet I went through years where blisters would form in the arches of my feet where the lumps rubbed but the skin did toughen and the pain went away - now no problems. With my hand no special treatment but I have had to thicken the grip on my tennis racquet to avoid cramp caused by DD and in the gym I do now where gloves a lot of the time to reduce the rubbing on new nodules.