Friday, 19 July 2013

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 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.