Patient series - Patient 1 Introduction

This is the first post on the monthly patient series that I am going to be doing. I have a group of patients that have agreed to answer a set of questions for me every month with the aim of giving a wider overview of patient experiences with this condition. 

Each patient will have an introduction post and the monthly updates will all be delivered together as one post. This is the first introduction post: 

Please note that their first language is not English and I have tried to correct any errors but not changed the content of the post. 

Initial Background Questions:

Please state your age, gender, country of origin and where you live (if different to origin) and how long you have had the condition?

I am a 45 year old male. I was born in the south-west of Holland, where I still live. I have ledderhose from the age of 10

Do you have it in both feet or any hands?

I have it on both feet and hands. I also have knuckle pads. It started on the age of 10, when I stepped into a nail.

Please detail any family history or common risk factors which apply to you:

My father has Dupuytren on one hand. It started when he was 12 when he got a snowball (with a stone in it) on his little finger. His sister also has got Dupuytren. I do not smoke, drink 1 or 2 glasses of alcohol a week and do not have diabetes.

Please list any treatments you have had, the time since you had them, the progress (or lack of) after treatment and any side effects:

• 1979    First lump under my right foot after stepping in a nail in the middle of the plantar fascia
• 1979    First removal of a lump under my right foot.The lump was back in three months. Not very painful, was roller-skating after a month.
• 1985    Second removal of the lump under my right foot. The lump was back in three months.
• 1995    Third removal of the lump under my right foot. The lump was back in three months. A nerve was damaged during the operation. I had a lot of pain and problems with walking.
• 1996    Fourth removal of the lump under my right foot. They removed a big part of the fascia plantar and the nerves of two toes. After 6 month of therapy I could walk normal     again without much pain.
• 2000    There is a small lump under my left foot
• 2010    My little finger from my right hand is contracting, there are nodules
• 2010 The lump under my left foot is growing. I have problems with walking. A podiatrist made orthotics for the lump under my left foot.
• 2011    Partial fasciectomy on my right hand with the use of fire-breaks. Had a lot of edema in my fingers and had to use a pressure glove for several month. During the night I had to sleep with a plastic brace for half a year. The first lump was back after 2-3 months. After 4-5 months my hand was fully operational. I had no pain after using it.
• 2011 and 2012 I received three injections with corticosteroids in the biggest lump under my left foot. After the first two injections the lump shrank for two to three month. After six month the lump started to grow. After the third injection I had a big bruise under my foot. Walking was very painful. Could only walk on running shoes. I used a special band-aid for under my foot to distribute the pressure. Could not walk far without the band-aid, with band-aid for 30 minutes.
• 2013   My little finger from my left hand is contracting, there are nodules
• 2014  Had a needle fasciotomie on my left hand. After 10 days with a cast arm they started with therapy. Recovery was slow. Lump was back in a month. Could use my hand without pain after 5 month. Sometimes still painful. Couldn't sleep with the plastic brace because of the pain.
• 2014 (June) a nerve in my right hand is giving a tingling feeling. After a day work my hand is beating.
• 2014 had a fasciectomy on my right hand. After 14 days they removed the stitches and started with hand therapy. Have to sleep with a brace during the night. When my hand is tired during the day I may use the brace for 30 – 90 minutes. Under my left foot I have four lumps. The biggest one is 8 x 5 cm and 1 cm high, the smallest one has the size of a pea.

Please detail any other information from your past which you think may be relevant and not covered in the monthly questions:

The doctor of the Erasmus MC offered to remove the Plantar fascia of my right foot, and use a muscle of my leg to make a new plantar fascia. I think my lumps are to big to use RT, also the health insurance company’s don’t pay for this treatment.

Monthly Questions:

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 

I feel a nodule in my right hand. The nodule in my left hand is growing. Under my left feet the lumps are growing slowly. I have more pain in my left hand, because I have to use it more after the separation of my right hand. Walking more than 30-45 minutes is painful, can’t stand still for more than 2 hours. On a bad day every step is painful.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.

On a scale from 0 –10 the maximum pain is 8, minimum is 0-1. The average is 4-5

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition

On the 29th of September the doctor performed a fasciectomy on my right hand in the Erasmus MC, Rotterdam (Holland). I used a mitella for 5 days.  After 14 days they removed 17 stitches and hand therapy was started. I have to practice 5 times a day and received a plastic brace to sleep with. I went to work(office) for half a day 16 days after  the treatment. Pain is getting less. The health insurance company paid for the treatment.

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.

I am right handed so the impact is big. Still can’t lift things or unscrew jars with my right hand. Life

is in first gear at the moment.

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

Went for a walk each day. After 30-45 min walking is painful. Do exercises with balloons with my right hand, the putty is still to difficult/painful.

6. Please list any other information that you think would be useful.

N/A

3 month radiotherapy follow up for Ledderhose

So today I had my appointment with Dr Shaffer and all I can say is that everything went pretty much as I expected, to quote him, “Radiotherapy has worked extremely well on your feet” and considering I had to quit my job a few months ago because of this (FYI still the right choice) “the change has been remarkable”. Much like I have said over the last few weeks walking has become easier and again to quote “if I didn't know the lumps were there I probably wouldn't be able to find them” and “they are much softer”. That was pretty much how the assessment went, we talked about monitoring progress and I will basically get a form every year to return to Dr Shaffer to say how I am going and as he said my blog will be a good source to keep him updated anyway. There is still a change for things to progress and get better but it is likely to be much more gradual and it may not  be directly because of the radiotherapy but because over the next three months I adapt my walking and start to increase my fitness again then things are going to continue to improve and I am already very happy with where things are.  

He also congratulated me on the pregnancy of my wife and I did likewise to him, he is expecting twins in December, and then we started talked a bit about patients, being contacted through websites and the possibility that I may now make a website using a domain name that he owns (www.ledderhose.co.uk) and he is willing to look at the content and the British Dupuytren's Society are going to help as well, talking to them about that now. The idea of this site will basically be to make a more formal version, an easier to follow version of the blog. Now this is conflicting slightly with the content of the British Dupuytren's Society but I feel it still has a place in the world wide web as many people looking for Ledderhose may not click onto a site that is talking about Dupuytren's and so perhaps this site could basically be focused on the treatments for Ledderhose and then the other content such as the details on risk factors and everything which is largely based on Dupuytren's information can go on the BDS site and would be linked to from the new site.

Overall I am thrilled with how this treatment has gone, Dr Shaffer spoke to me about a conference he went to where there were lots of Surgeons that do work on the hand and Dupuytren's and very few of them knew about radiotherapy, quite frankly this is crazy and I think that one of the first things that needs to be done, as I am sure everyone is aware, is not the education of the patients of the media but the medical professionals, this option is for most people surely a far far better options that getting bits cut out. I have spoken to many unhappy surgery patients but I have to really stretch my mind to think of a happy one whilst the complete opposite is true for radiotherapy but when I went to see the NHS specialists for these conditions not once was the option of radiotherapy mentioned and all I was told was to hold out for as long as possible before having surgery.    

So my  goal now is to write a few letters to various NHS people to see what their explanation is, is money really an issue for a condition which has so few patients and if that is the case why the ignorance on the part of the specialists about the treatment which should at least be discussed with the patients. At least from my own selfish point of view if I can’t convince them and it does return, should I still be with the same company, which is my intention, then I have private medical cover so will not have to worry about the expense and I will now where to turn to get the treatment. 

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.