Thursday, 28 June 2012

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.