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 DD and LD patient

This is an interview that I have had for a while and I am waiting for an update from the patient, however they have become silently harder to get hold of so I thought I would post the interview and then I can always add an update. This patient has Dupuytren’s, Garrod’s pads and suspected Ledderhose with some family history. They were early post-surgery which is why we were going to wait.

Read on for the interview:

1) Do you have Ledderhose Disease, Dupuytren’s disease or both? 

I have Dupuytrens Disease on both hands with Garrods Pads to all my PIP joints. Effectively my palm and ring finger to the PIP on my left hand and my right hand is contracted on the palm and to the little finger PIP. Whilst I haven't yet sought medical advice I have a pea sized lump on each of my feet in the arch area which I suspect will be diagnosed as Ledderhose Disease (hopefully I'm wrong)

2) Do you have a family history of the disease? If yes how prevalent is it? If no are you at risk from anywhere else such as diabetes, excessive alcohol, smoking etc?

My Grandfather had Dupuytrens to one hand. The disease has not passed over to (his son) my father or my siblings.

I do not smoke, drink excessively or have Diabetes.

3) What is your age and how long have you been symptomatic? (Can talk about disease progression etc such as how long it took to reach a certain point etc)

I am fifty years old. I think I first noticed the creases in the palms of my hands and the lumps on my knuckles approximately fifteen years ago. I was told by my GP regarding my palms I had Dupuytrens Disease and to stretch my affected fingers. I was x-rayed for my knuckle condition and told everything was fine.

Over time and very slowly the creases in my palm became deeper and imperceptibly the fingers contracted towards my palms. There was no pain or real inconvenience until recently I noticed clapping (the Olympians parade in London) and putting on gloves was becoming awkward.

4) What treatments have you received? 

Apart from my GP's advise to stretch the fingers I received no treatment. Recently I was referred to an Orthopeadic Surgeon who advised partial fasciectomy to my left hand, once that has healed he recommends the same surgery to my right hand.

5) How successful were these treatments? 

I can not really say as I am still wearing the dressing, however I can see that the contracture to the PIP joint has not be resolved, hopefully once the bandages are removed I'll see that the overall angle is less, it feels as if that will be the case (stretching my fingers out within the dressing). I'm also hoping that post operative physiotherapy will improve the situation.

6) You said you had surgery, what was this experience like? 

The surgery thus far has been fine, very little discomfort although I wouldn't recommend knocking the hand! Obviously I'm not sure as to the position after the dressings are removed but at this point I'm feeling optimistic even though I'm prepared for a time of scar healing which I expecting to be sore for some time.

7) Are you currently satisfied with the treatment that you have received?

I am very satisfied in as much that the route I've taken seems to be the most common scenario. I would say the development and use of Xiapex seems to be very promising and given a choice I would of opted for that course of action before surgery.

DD and LD patient, Xiapex (DD) and RT (LD) in depth interview

Today I am posting an interview that I have done with someone who has contacted me through this blog, they did this a while ago as they were thanking me for all my hard work and they have been in regular contact asking about my progress, the progress of the pregnancy and updating me on their progress. Julia comes across as a really nice person and I hope to meet her in person soon and here are the (in depth) answers that she gave to the questions I Put to her about her experience with DD and LD. Enjoy! 

1) Ledderhose is a part of a group of related conditions, which of these conditions do you 

suffer from?

I suffer from both Ledderhose Disease and Dupuytren's Disease.

2) How long have you been suffering with these conditions and how have they developed over the years?  

I have suffered from Dupuytren's since mid-2011 when I noticed the small finger on my left hand was beginning to turn inwards towards the palm. Rather than wait until the contracture caused problems with day-to-day living, I chose to have Xiapex treatment in December 2011. Unfortunately this seemed to kick-start aggressive Dupuytren's and Ledderhose Disease. Just twelve months later, in December 2012 I had dermofasciectomy and skin graft on the same finger and the ring finger of the left hand is now also showing signs of contracture.

I have suffered from Ledderhose Disease for just one year. I first noticed lumps appearing on both feet in March 2012 – a few months after the Xiapex treatment. They grew very quickly and it was soon difficult to walk without considerable pain and felt rather like walking barefoot on hot pebbles.

I am now 66. 

3) These conditions are often genetic, do you have a family history of these conditions? 

No, none whatsoever.

4) What treatments have you received? 

a) For Dupuytren's?

NHS treatment other than surgery for Dupuytren's Disease was difficult to obtain locally. I was advised to wait until the contracture was restrictive as “it will only come back”. I thought this was a very negative attitude and decided to carry out some personal research.I discovered Xiapex was being trialled in the south of England. I contacted the consultant involved, Mr. David Warwick, and as soon as Xiapex was cleared by NICE and available to private patients, I had my little finger injected. Initially the treatment was very successful and the finger was straightened but within 24 hours I developed a rather large blood blister, followed by swollen lymph glands. The blood blister held up the healing process, the fitting of a splint and the start of physiotherapy. Within weeks, I noticed that the ring finger on the same hand had also begun to contract. Prior to the Xiapex injection this finger was perfectly straight. Immediately after the injection it was very swollen but I was told this was not unusual. As the swelling subsided, the finger began to contract towards the palm and has continued to do so. It is now approximately 30º from the PIP joint but oddly there are no visible cords or nodules associated with this contracture. Six months after the Xiapex treatment, the little finger had bent inwards again. Normally a further two Xiapex injections can be given but because of my reaction to the first injection the consultant who had carried out this procedure did not consider me to be a suitable candidate for further Xiapex injections.

My GP referred me to see two local NHS consultants who totally disagreed with each other about how to proceed. (Neither of them knew much about Xiapex.) Dr. Shaffer,  who at that time was carrying out radiotherapy treatment on my feet, recommended I visit a hand specialist in another part of the country, Mr. Chris Bainbridge. Mr. Bainbridge recommended further Xiapex injections despite having been told my previous history. He strongly disagreed with the surgery suggested by one of the NHS consultants I had seen locally but felt a full dermofasciectomy with skin graft would give good long term results.

In November 2012 I had a full dermofasciectomy with skin graft carried out by the same surgeon who had undertaken the Xiapex injection, Mr. David Warwick. This was performed privately because although I had been on a NHS waiting list throughout the summer, I still had not been given a definite date for surgery. The finger is not completely straight but is very much improved. Also, I continue to wear a splint at night to straighten the finger as it does tend to bend inwards during the day. Given my personal experience, I would not choose to have a Xiapex injection again but I do appreciate Xiapex has been very successful in other patients. I am concerned that not enough has been done to explore the possibility that a Xiapex injection in one area can result in the onset of Dupuytren's and Ledderhose Disease in other parts of the body. This has been reported by many patients (see for example the Dupuytren's Society web site) and although medical staff tend to dismiss these concerns, I most certainly had no sign of Dupuytren's Disease in any other finger on my left hand or Ledderhose Disease in my feet, prior to the Xiapex injection.

b) For Ledderhose?

My GP had even less knowledge of treatments for Ledderhose Disease than for Dupuytren's  Given my experience with Dupuytren's  I looked on the internet and found Gary’s Blog detailing his experiences as a fellow sufferer. Thanks entirely to Gary, I learned about Dr. Shaffer and radiotherapy treatment. I arranged to see Dr. Shaffer straight away as a private patient - this was within a few months of the first signs of the disease. I had radiotherapy a few weeks later. 

5) Are you currently satisfied with any of the treatments you have received for either 

condition? 

The radiotherapy treatment for Ledderhose Disease has been a complete success. I cannot thank Gary Manley and Dr. Shaffer enough for quite literally giving me my life back. In March 2012 I could only see a future full of pain, being confined to a wheelchair and having repeated surgery on both feet. Since having radiotherapy, the lumps have become pain free, smaller and two have disappeared altogether. (I recently spent four days sightseeing in London – up and down subway steps, walking round exhibitions, galleries, etc. from early morning until late evening accompanied by someone far younger and fitter than myself. I wore flat leather lace-up shoes but no special orthotic aids. I was completely pain free. The weather was unusually cold for the time of year and this could well have contributed to the lack of pain. Unlike some Ledderhose sufferers, my lumps like the cold, especially walking barefoot on tiled floors! The true test will come when I spend a week exploring Paris in the heat of the summer.) I feel that the success I have had with radiotherapy treatment for Ledderhose Disease is due entirely to the fact I was treated very early on – within months of the first lump appearing. Although the lumps then grew at a fairly alarming rate and became very painful, the radiotherapy treatment appears to have halted any progression of the disease. 

I only wish I had had been made aware that I could also have had radiotherapy for Dupuytren's contracture when it first appeared. (Neither my GP or the consultant I saw regarding Xiapex treatment gave me any information about radiotherapy). Even  now, having had very successful radiotherapy on my feet for Ledderhose Disease, the orthopaedic surgeon who carried out both the Xiapex treatment and dermofasciectomy, Mr. David Warwick, seems sceptical about radiotherapy and doesn't appear willing to give his hand clinic patients information about this method of treatment. I find this most odd because I would have thought that radiotherapy should be offered as soon as a cord or nodule becomes visible or a finger starts to contract. Radiotherapy is to me far less of a risk than NA, Xiapex or dermofasciectomy for Dupuytren's Disease, all of which could result in infection/tendon damage/numbness etc.

I think there could be more people suffering from Ledderhose and Dupuytrens Disease than GPs are aware of. In my own small village I have discovered three further patients. (They all thought it was something which happened in old age – arthritis or cysts – not worth bothering the GP with!)

6) Have you found any resources that have been helpful for with understanding and getting treatments for these conditions? 

The internet and in particular Gary’s blog have been the foundation of my learning about Ledderhose Disease. By following Gary’s leads and guidance I have met with Dr. Shaffer and subsequently Mr. Chris Bainbridge. These two consultants gave me a great deal of information about radiotherapy, Ledderhose Disease, Dupuytrens Disease and the Dupuytrens’ Society.

Patient forums give one an insight into what to expect from the various treatments available, although we are all individuals and have varying levels of pain tolerance and success rates.

A little update on how what has happened since I last posted:

Well for regular visitors I would like to ask a favour, particularly if you are in the UK and a Ledderhose patient or if you are a Dupuytren's patient worldwide.

 Dr Chris Bainbridge, a specialist in the UK, who has done work with Xiapex amongst other things has contacted me directly and told me that he is currently running a survey for Dupuytren's patients which you can find here: https://www.surveymonkey.com/s/Dupuytrens_disability_survey

Please fill this out as who knows something useful might come from this.

He is also considering looking into the application of Xiapex in the treatment of Ledderhose disease, this is something that I am not aware of having been tried before but was something that I was looking at back when I was considering my options.  I came to the conclusion that although it might be useful it is not something I want to try because reports suggest that the treatment should work better on the cord than a lump and with Ledderhose the lump is the main problem and with Dupuytren's treatment there has been feedback that there is often swelling and I doubt this would be nice in the foot.

Now I know I have not really sold it but if this is something that you would be interested in then please either get in contact with Chris Bainbridge who needs enough interested parties before considering it or you can contact me and I will pass you name and contact details on to him.  

I have also played a much harder game of badminton and although the foot itself did not hurt too much there were consequences of me playing again. The main problem with my play was that I was finding moving around the court harder and not because of pain but as it turns out because I was shifting my weight onto my right leg this of course is still an instinct from having been in so much pain. I still won but I have had a lot of pain in my right leg for the two days since playing. Hopefully a new pair of orthotics and a new pair of trainers and I will be well on my way to full recover. 

2 days until a year since my first post. 

Late complications with Collagenase injections?

Today I got an e-mail telling me that there was a new paper out relating to Dupuytren's (thank you Google Alerts), so I went and had a look and it is another paper that is looking at collagenases such as Xiapex/Xiaflex. For those who don't know these are enzymes that break down the main complex that forms the cords in Dupuytren's and I have heard that it does have some positive influence on nodules as well. 

For background information see some of my previous posts which include: 

• Interview with a Hand specialist in the UK who administers Xiaflex 
• Interview with a patient who has had Xiaflex 
• Some science on it working in cells

 Still in this paper they are looking at patients after a time that is greater than that used in the phase III (the final phase) clinical trials:

Late Complications of Clinical Clostridium Histolyticum Collagenase Use in Dupuytren's Disease - It is an open access article so anyone can go and have a look and if you don't understand anything then please ask me questions and I can probably agree that I didn't understand either - Warning there are some graphic pictures of procedures being performed on a hand so don't look if you can't stand that sort of thing. 

What do they find: 

2 of 12 patients had problems. 

Well the typical follow up period in the trials was 3 months and here they go up to a year in what is unfortunately a small sample group of only 12 patients and they find that: (Just because I like at least one picture per blog post): 

Although the majority of the patients are fine 2 do have side effects, in the pie chart this may look like a small amount but imagine this applied to 1200 people rather than 12 and suddenly that is 200 people with problems. 

These two patients had significant disability in the injected hand and also suffered from pain and in both case operative intervention was taken a year after the treatment with the collagenase. They found that there was deep tissue scarring that was presumably caused by the injection and that this could be the cause of finger stiffness and pain. They then waffle on about science stuff and come to the conclusion that long term problems is something that those administering this drug should consider both before and after giving the treatment. 

If you are interested in learning more about this then please e-mail me, post a comment or hop over to the forum and share your story at the same time.  

An interview with a Dupuytren's / Xiapex specialist - Dr Elliot Sorene

So today I have some questions that I sent to Dr Elliot Sorene. Elliot Sorene MB BS FRCS (Tr & Orth) EDHS is a leading specialist on the use of Xiapex for the treatment of Dupuytren's in the UK. He is currently at the University College Hospital, London where among other things he has been selected to lead a team of consultants for hand and wrist injuries for the London 2012 Olympics. Here I have asked him about the use of Xiapex for the treatment Dupuytren's and his thoughts on this treatment.

You can find more information out about him on his website London Hand. (Information above and picture used with permission from the above link) For more information on Xiapex it is something I covered a bit here.

I have to say that I really appreciate that a professional who works on these diseases is willing to take the time to answer my questions. In fact due to this yes and one from Dr Richard Shaffer I have sent out a few more e-mails to see if I can get anyone else to agree to share some information with us. 

1) How long having you been treating Dupuytren's disease and roughly how many Dupuytren's patients have you treated? 

I have been treating Dupuytren’s disease for 15 years and I have treated hundreds of patients.

2) How common do you think Dupuytren's is in the UK? 

Dupuytren’s disease is very common in the United Kingdom.

3) What percentage of the patients you have treated have had a family history of Dupuytren's or a related disease? 

Many of the patients do have a positive family history or related condition.

4) I have seen that you treat with Xiapex, what is Xiapex and how does it work?  

Xiapex is an enzyme called collagenase that dissolves part of the Dupuytren’s cord. (The cord is mainly formed of collagen and collagenases break down collagen)

5) At what stage of Dupuytren's is Xiapex administered? 

Xiapex is administered when there is a symptomatic Dupuytren’s cord causing a contracture

6) Why is Xiapex a better course of action than surgery or radiotherapy? 

Radiotherapy can be used for nodules and disease before there is a contracture. (With a view to delay disease progression).

The results with Xiapex are similar to surgery however there are fewer issues with wound healing, dressings changes, scarring and physiotherapy. Often with Xiapex the recovery is in terms of days or weeks as compared to months after surgery.

7) Xiapex is used to treat Dupuytren's and I have seen that it is in trails for a related disease, Peyronie's. I suffer from Ledderhose disease and I have seen no information linking Xiapex to Ledderhose disease, why is this?

7b) I was recently contacted by a patient suffering from Dupuytren's and Ledderhose whom has had radiotherapy for Ledderhose and Xiapex for Dupuytren's. Overall they were very happy with the Xiapex but also found that it helped the painful nodules in their hands and therefore does not see why at least some tests or trials are not being done using Xiapex on Ledderhose disease, what do you think about this?

Ledderhose is managed normally by foot surgeons and this is not my field however I see no reason why Xiapex could not be used for a symptomatic contracture in the foot.

Xiapex like surgery does have a recurrence rate. Just as surgery is not often indicated for nodules nor is Xiapex . Often nodules in the hand are painful in the proliferative phase of the first year or two and then may hurt less. Surgery on a nodule in the proliferative phase may cause recurrence and a cord or contracture formation.

8) Finally do you have any advice or other information that you would like to share with Dupuytren's / Ledderhose patients and what's your website address? 

My advice would be to view this condition as being very common in certain population groups and in effect a normal finding.

Treatment is only indicated in the presence of a symptomatic cord causing a contracture. Treatment (apart from with radiotherapy) in the presence of nodules should only be undertaken bearing in mind that the treatment itself could hasten progression to symptomatic cords or contractures.

I would like to say thank you again for the willingness shown to answer these questions and I hope that it proves useful to Dupuytren's patients out there. 

Xiapex leaflet

So today I was doing a little research into things, like I normally do. I was looking around for Xiapex/Xiaflex information and as a result I have e-mailed Mr Elliot Sorene a specialist in London to see if he'll answer some questions for the blog. 

On my travels though I came across a leaflet produced for patients on Xiapex. 

Available for all to see here: In case you can't be bothered to read it I have summarised some of the information below.

What does the leaflet say?

• Xiapex is a collegenase that is used on Dupuytren's patients with a palpable cord. 
• It works by being injected into the cord which in then breaks down so contracted fingers can be straightened.
• Shouldn't take it if you are allergic to any ingredients and should not be given to under 18's or pregnant women. 
• Side effects include swelling and pain, dizziness and headaches. 
• During recovery you will have your hand bandaged and motion should be limited in treated hand. 
• Finger may straighten by itself but patients should not attempt to straighten by themselves. 

Of course there is much more information in there so read it if it is something that you are interested in. 

I will of course keep you all updated on my communications with Mr Sorene who I am hoping will become one of many specialists that I can ask questions to. I am of course also going to ask Dr Shaffer and I'll see who else I can get in contact with, any requests or recommendations from patients are welcome. 

Interview with JHB, LD, DD patient had radiotherapy and Xiapex

In this interview I am talking too a patient who had both Ledderhose and Dupuytren's and has experience with different kinds of treatments. 

1) Do you have Dupuytren's disease, Ledderhose disease or both? 

I have both Dupuytren's and Ledderhose disease. I have had Dup in my left hand for years. I got LD in both feet about 2 years ago.

2) Do you have any family history of the disease? 

No, so far as I can tell no one in my family has had either Dup nor LD

3) what treatments have you had for your diseases? 

I had radiotherapy on the feet and hand in 2010. It has slowed the LD but the Dup was too far advanced in my hand. Since I had the RT a large nodule has appeared in my right arch but fortunately it isn't painful. I had the radiotherapy done in Wimbledon, UK, under the guidance of Dr John Glees.  I had 10 sessions over 2 months. I didn't notice any real improvement for a month or two when I realised that the nodules on my left foot had stopped hurting. I really think it only works at all in the very early stages and even then it possibly only slows the development down. 

I had Xiapex in the hand in November last year to straighten my middle and little finger. The results were good but I do need to stretch the fingers every day to stop the fingers resuming their previous curl.

4) For you it sounds like both radiotherapy and Xiapex have been successful, what were your motivations behind trying them? 

I wanted to avoid surgery as it can only be repeated once or twice and I am only in my early 50's.

5) I know from talking with you that you would like a trial for Xiapex in the feet, why is that? 

The reason I think Xiapex may be the answer for LD is that the nodules in my palm and fingers have shrunk and softened. A big nodule in my palm used to hurt when i gripped things but the pain has now gone. If it has greatly reduced the nodules in my hand why not the feet? It must be worth a trial.

6) I know you are not a Dupuytren's specialist but if you met someone with Dupuytren's what treatment would you recommend? Of course I appreciate that this may vary depending on the stage of the disease

For Dup I would suggest a needle procedure for anyone who works with their hands and Xiapex for everyone else as it takes longer to heal with Xiapex. If it's really bad then surgery has to be considered. Radiotherapy is only worth considering in the early stages of the disease (before there is too much contracture.

Forget creams and potions; they don't work.

7) How much pain / discomfort are you find is caused by the Dupuytren's and Ledderhose and have you found anything that helps to alleviate any problems?

I get cramp and some stiffness in the hand. There is no pain in my feet as the nodules on my left foot stopped hurting after the RT, but they are still the same size.

Whilst chatting with him one of the comments that I can't place under a specific question but would like to include is something which I agree strongly with him about and that is: 

"The problem is that Ledderhose is awful but so rare that the NHS isn't nearly so concerned about it as they are Dupuytren's." 

This was a good interview as John has experienced many different kinds of treatments and this is one thing that I am particularly interested in covering. It was also good to hear from someone who has had radiotherapy for the Ledderhose on their feet and although there is no decrease in size of the nodules there has been a decrease in pain which is something that I too hope to experience. 

John also has a big interest in Dupuytren's and Ledderhose and the care and treatments that students receive. In particular I was interested by his enthusiasm for Xiapex as a treatment for Ledderhose as well as Dupuytren's. This is something which I am sure many Ledderhose patients would love to try, no surgery, no increased cancer risk and potentially a big gain. I know that the theory says that the collaganase that makes up Xiapex is mainly aimed at Dupuytren's because of the collagen type that the nodules are composed of is different to that of the cords. But here he has experienced an improvement in his Dupuytren's nodules after treatment with Xiapex and I agree with his sentiment of why not try it? My guess, money. 

3 year follow up data from Xiapex:

I came across an article the other say that I have been meaning to cover since but have just not found the time to do so. It is of particular interest as I am in the process of interviewing a patient who has had Xiapex for their Dupuytren’s and would like to have it for Ledderhose but it’s not available.

So onto the article –

 Real World Data reinforce clinical efficacy of Xiafex in the treatment of Dupuytren’s Contracture:

So the news was that there has been a follow up from cases where Xiapex has been used and the outcome looks to be promising. For those not in the know Xiapex is the collagenase (an enzyme that breaks down collagen) that is in use to try and dissolve the troublesome tissue that is associated with Dupuytren’s as this is mainly composed of collagen.

The results showed that the degree of improvement seen (in terms of angle of contracture) was on average 36.6 degrees and that there was an 84% improvement in range of motion. In total  over 500 patients were monitored and only an average of 1.08 injections were required per joint compared to 1.5 in the clinical trials, this is a big advantage in terms of cost as only required one injection would be much cheaper.

Interestingly there were also results coming in about recurrence in a three year period, this is important because this diseases do have a high tendency to come back. What did they find? Well they saw that only 35% of patients treated with Xiapex for this disease reoccurred. Having a 3^rd of people have it come back in less than 3 years is not what the people that have these diseases want to hear as it was kind of hoped that there would be a better treatment that removes it.

Overall though it is good to hear that for a lot of patients this treatment is working and that it is not coming back in a really short period of time, after all for some surgery patients it has practically come back by the time the bandages have come off. 

Xiaflex works on condition other than Dupuytren's

I mentioned ages ago that I had signed up for a Google Alert for Dupuytren's and this has proved to be very helpful over the last few months and this weekend my phone has been buzzing so much with the same alert over and over again it is crazy. 

I mentioned the news that Xiaflex works for Peyronie's disease was announced in Nature this week in my post on the new Pfizer "It is in your hands" post and well that has been a big hit this week and here is some of the titles that I have been getting: 

• Penis too curvy from Peyronie's disease? A new drug might help 

• Why Auxilium Pharmaceuticals Shares Popped

• Treatment for Penis Curvature Sees Results

• Auxilium Pharmaceuticals, Inc. Announces Positive Top-line Results from Both Phase III Trials of XIAFLEX® for the Potential Treatment of Peyronie's Disease Source: PR Newswire (http://s.tt/1di6m)

Well that is a taster of them anyway. Interesting to also hear that they are looking at testing if for frozen shoulder as well. 

Things to discuss with specialist

So as many of you will know I have my next appointment with the foot specialist on Monday and I have lots of things that I want to discuss with him. Last time that I went I was fairly happy with the way the orthotics were working but this has changed drastically since then and I am now unhappy with the way that things are so I have many things to discuss with him.

1. More lumps? or just complications - I have been getting more and more pain towards the toes on my left foot and I am wondering if I have a lump down there or I am sure I have heard some people mention cords in the foot. I must admit that I cannot feel anything but perhaps something that might suggest there is something came up in the MRI? Though I am not sure how big an area they covered. That the pain now is enough that I am often struggling to walk, using a walking stick from time to time and it can stop me from getting to sleep and has once or twice in the last few weeks woken me up, I was checking this morning and I am sure the lump is getting bigger again. It is also now starting to affect my work and that I have times where my foot goes numb along the base and what does he make of that?
2. My Right foot - This has been feeling increasingly painful in the arch and in a specific area and in this area I think I can feel a lump so I am wondering if I maybe getting it bilateral but I am not sure and perhaps I am just being paranoid.
3. Can I have a copy of my MRI pictures?
4. Pain relief, can I have some please?
5. What does he think is the best option for me now?

• Is it radiotherapy and is it in another country or this country?
• Is it Xiapex or some similar injection?
• A gel like Verapamil? - I have heard many more stories of this not working rather than working.
• Is it, in his opinion, surgery? (which I will avoid)

I will of course be trying to remember everything that went on and will hopefully be able to post back in details what the guy said and whether I found it helpful or pointless. If I see the same guy as I saw last time I am at least hopeful that he can advise me on what he genually feels is the best option as he will know about radiotherapy and the other options but if I get the guy I saw the first time I think I will probably be making a complaint to the NHS about the lack of knowledge that this guy has.

In order to go armed I will be taking my book, the Dupuytren's Disease and Related Hyperproliferative disorders book with me as I know it at least mentions radiation to treat Ledderhose and Xiapex to treat Dupuytren's.