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Xiaflex
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03/05/13 19:23
JohnG 
03/05/13 19:23
JohnG 
Re: Xiaflex

Amy, are you confusing Xiaflex with NA?

Paris is where the NA procedure got started, and some patients go there for NA.

03/05/13 20:35
AmyD 
03/05/13 20:35
AmyD 
Re: Xiaflex

Hi Wolfgang and John,

To answer your simple questions in a wordy and non-linear way :

I am somewhat distrustful of our current US insurance-doctor system. From what I have both read and discussed with others is that a person will actually pay about the same for a flight and treatment if they pay cash in Europe for a medical treatment as what they would have to pay for the uncovered insurance portion here. Plus you get a trip out of the deal even if it does not work that well.

I feel like my 2 options are RA or Xiaplex. I am not finding the thread at this moment but I thought a couple of adventurous souls had tried collegenase on their feet and had some success. I feel like the growths on my feet are very cord-ish and I think I am having a lot of ankle pain because it is pulling on the tendon. Xiaplex seems like the least invasive way to try out this hypothesis. I also maybe wrongly believe a shot of Xiaplex has to cost less than a round of RA? And I may have it wrong that Seph’s Doc in Paris also does Xiaplex shots-maybe I am getting confused that she only does NA? It seems like she would have the most experience on putting the shot in the best spot and she seems priced appropriately?

I do have a referral to a Radiologist here. But I know he does not have that much experience and I was told by the referring primary that he had had success with 2 of the 3 patients he had seen. I do not love that ration especially for the cost. I am concerned that going to see a doc that does not have enough experience will cause more problems than it will help. I am worried that I have enough foot pain if they do not cover enough of an area I will have another pop up quickly. I did get great information on Prof S but for some reason my husband balked at a week + trip to Germany (I think a worry about money).

While I have all these thoughts, I have enough concern and confusion that I have done nothing. I am fairly young and have young children. My ability to move is being effected by this, but with young children, I also do not have extra money to put toward it (as I know most people do not right now.)

I am OK that LD is what I drew out the “genetic hat”. I would just like to deal with it with some grace and intelligence (not sure I have either :-) ). I am so thankful for this forum. It is really and amazing group of people that are willing to support and share with others their experiences.

03/05/13 23:45
Seph 
03/05/13 23:45
Seph 

Re: Xiaflex

AmyD; I think you have a few things tangled here. Firstly the doctors that I see in Paris do NA. No Xiaflex as far as I know. NA is normally done to break chords but on my most recent trip Dr Manet-Chopin also performed NA on nodules and injected them with cortisone. I'm not sure how successful this has been as one nodules has flattened which is good but another, on the web between thumb and forefinger, is now about twice the size.

Next NA is a lot cheaper than Xiaflex. NA in Paris costs 250-300 euros per hand (about $US350). And no referral or prior consultation required.

And the rule with LD is do nothing if possible. Dr Manet-Chopin has told me that she sometimes does a combination of NA and cortisone on LD but she tries to do nothing if possible. Surgery does not seem to be effective on LD and can result in spreading the disease.

I have had LD for 45 years on both feet. At first it caused pain when running and sometimes when walking but over time I simply stretched the affected tendons and after a while no pain at all. I played squash in my 30's and 40's and I now play tennis 3 times a week with no problems. The only difficulty I have is with running over any distance. After 20 minutes or so the pressure on the nerves cause me to develop pins and needles which leads to my feet loosing all feeling.

The other problem I have had with LD is the lumps rubbing on the bottom of my shoes and developing blisters. I'm sure you are aware that blisters in the arch of your foot is not fun. I see people on this web site recommending orthotics and soft shoes etc. I'm sure that works for some but I take the view that this is with us for life so best not let it get in the way. My approach was to pop the blisters and rub with methylated spirits to toughen the skin (Be warned - this stings). Over time the lumps become like an extra pad under your foot and no more blisters.

So my view is stretch the tendons, toughen the skin and leave the LD alone.

04/22/13 04:38
FLNative 
04/22/13 04:38
FLNative 
Re: Xiaflex

fjellver:
Dear FLNative,

How are you responding to your treatments?

I was wondering if you could tell me the name and location of the Doctor who injected Xiaflex into your LD nodule.?
It would be nice to know his/her formula.

Thanks,
Fjellver


Dear Fjellver and Amy D and anyone else interested,

I am through with all radiation treatments--I did two rounds are on my hands and feet (each separated by 6 weeks) and I have not noticed any improvement yet.

I think the nodule in my foot that the Xiaflex was injected into has shrunk and flattened a bit. It also seems a little harder and less painful. The doctor who injected is a hand doc and it was his first time trying it after I told him I would be willing to try it. I do not feel comfortable at this point sharing his name as I am not sure he wants it out there. And, I am sure he has not done it since.

Best to all!

12/01/13 05:56
b3l 
12/01/13 05:56
b3l 
Re: Xiaflex

Any update on your treatments?

12/03/13 08:19
AmyD 
12/03/13 08:19
AmyD 
Re: Xiaflex

Hi b31
Thanks for asking and for a quick answer I have done no treatment so I am not much help.
I found a podiatrist that did think xiaflex offered some possibilities but I did not push to see if he would treat because I was more interested at the time in finding out about rad treatment. Found that rad treatment was not an option because of cost. At the same time summer hit and my pain left and modules seemed to quit growing so I decided I could live with it. Winter is here and pain is back. I honestly think if I lived somewhere that I could walk on a warm beach everyday I would be ok.

12/03/13 11:56
Tamarakruse 
12/03/13 11:56
Tamarakruse 
Re: Xiaflex

I too would appreciate updates. I am at this point deciding to go ahead with radiation next week for my feet, but think I will hold off and try something else with my one hand, as there do seem to be other options. Did the earlier comment on using this for your hand, did that work out well and how long did that take? Hopefully, there is still improvement time for your foot.

Tamara

12/03/13 12:40
wach 

Administrator

12/03/13 12:40
wach 

Administrator

Re: Xiaflex

Hi Tamara,

what kind of options are you looking for? Xiaflex is no alternative to radiotherapy, both treat differents stages of the disease. Xiaflex works only for contracture, radiotherapy only on early, growing ("proliferating") nodules

Wolfgang

Tamarakruse:
I too would appreciate updates. I am at this point deciding to go ahead with radiation next week for my feet, but think I will hold off and try something else with my one hand, as there do seem to be other options. Did the earlier comment on using this for your hand, did that work out well and how long did that take? Hopefully, there is still improvement time for your foot.

Tamara

12/13/13 21:23
Helena 
12/13/13 21:23
Helena 
Re: Xiaflex

Dear FLNative,
I would very much like to know if you would recommend Xiaflex for a lump in the foot after your experience. I am asking because I have a friend waiting exactly for that operation. The doctor has tried a few times with Dupuytren lumps and saw good results, but this will be the first time to try with LD. My friend is quite young yet and the lump is not big but it bothers him when practicing sports, so he decided to try Xiaflex. Any thoughts will be apreciated!

12/14/13 00:14
GaryBall 
12/14/13 00:14
GaryBall 
Re: Xiaflex

GaryBall:
Helena:
Dear FLNative,
I would very much like to know if you would recommend Xiaflex for a lump in the foot after your experience. I am asking because I have a friend waiting exactly for that operation. The doctor has tried a few times with Dupuytren lumps and saw good results, but this will be the first time to try with LD. My friend is quite young yet and the lump is not big but it bothers him when practicing sports, so he decided to try Xiaflex. Any thoughts will be apreciated!

Young and small lump!!!!........I would think long and hard after an extensive search around the forum.....it seems to me that the least interference with LD the better the long term outcome......xiaflex may well kick the active disease into a higher gear!!!

I would look after those feet......keep trauma low ......and document any changes in a foot diary......then consider RT...

Gazza

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