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Is there any hope for Ledderhose?
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01/19/09 19:52
debrr 
01/19/09 19:52
debrr 
Is there any hope for Ledderhose?

I have been looking around here a lot. There is a great deal of information. However, when it comes to LD , there doesn't seem to be as many options. Am I missing something? From what I understand the earlier the treatment the better. Am I wrong?
I have a golf ball lump in my right foot that I have had since completion of chemotherapy, several years ago. Then I developed one in the left foot, and it has rapidly grown...MRI says it's even bigger.
I have had SO many surgeries, and really am desperate to figure out what to do. Esp. since left one seems to be progressing so rapidly. They are also painful and becoming difficult to walk/stand. I also have nodule in the pinky finger that is becoming quite painful, although no contracture. ( I don't want anyone to shake my hand)
Because I am desperate I have used a compounded 15% trandermal verapamil for about a month and a half. I also began taking NAC a few days ago.
This group is a Godsend! So many of you have so much knowledge! I have spent days/weeks pouring over all the information and still can not gather it all.
Can someone please share their knowledge with me so maybe I can do something while these are still manageable??
PS. My orthopedic told me this is the worst he has ever seen, although they can still get larger. Next step is a podiatrist.
Thanks!

01/19/09 20:10
jimh 
01/19/09 20:10
jimh 
Re: Is there any hope for Ledderhose?

Most of us who have followed the development of Xiaflex think there is good reason to expect it would be effective for Lederhose. My Lederhose is not a problem but if it was, I'd be waiting for the word on Xiaflex before considering more drastic action.

01/20/09 08:28
wach 

Administrator

01/20/09 08:28
wach 

Administrator

Re: Is there any hope for Ledderhose?

Hi debrr, did you see http://www.dupuytren-online.info/ledderhose_therapies.html ? There are some options for Ledderhose though not as many and not as good ones as for Dupuytren's. Radiotherapy might help for your nodules, both foot and hand. I myself am having a nodule on my pinkie radiated right now and I am wearing a night splint on that finger as a preventive measure. So far that seems to hold progression.

Wolfgang

01/20/09 19:19
debrr 
01/20/09 19:19
debrr 
Re: Is there any hope for Ledderhose?

Thanks jimh and Wolfgang for taking the time to respond!

jimh: The only thing I had found on xiaflex was for Dupuytrens. Can you direct me to more information?

Wolfgang: I did look at the link you provided and that is where I got any info I do have. I started NAC because of that link. I may have misunderstood, but I thought it said radiotherapy was only good for small, initial stage nodules???
I too am splinting my pinkie, pretty much day and night. When I quite wearing one, it becomes pretty painful with normal activity.

Thanks for any input!

01/20/09 22:15
jimh 
01/20/09 22:15
jimh 
Re: Is there any hope for Ledderhose?

debrr, I think at this point Auxilium has made no public announcement about Xiaflex for Ledderhose but have included it in their investor presentations - see this SEC fileing:

http://google.brand.edgar-online.com/EFX...&ID=5479903


They have late-stage trials in progress for Dupuytren's and Peyronie's. If they get approval, it is then possible for MDs to use the drug "off label" for other conditions like Ledderhose. As you can see from the information in the Xiaflex presentation, they consider it just another manifestation of Dupuytren's disease. The conditions are obviously linked and involve identical fibrotic tissue. Xiaflex essentially dissolves that unwanted collagen, so I assume injecting it into a Ledderhose nodule would very be expected to reduce and soften it.

I think off-label use will happen, but probably not in a big rush. Xiaflex is where I place my bets for the future.


I've also seen posts from people who've had success with cryosurgery for Ledderhose. This amounts to just freezing the tissue by inserting tubes and running liquid nitrogen (I think) through them. The lump remains but reduces in size and pain is alleviated or ended.


01/21/09 08:46
Wolfgang

not registered

01/21/09 08:46
Wolfgang

not registered

Re: Is there any hope for Ledderhose?

Two additions to Jimh's post:

- Xiaflex (=collagenase) dissolves collagene, i.e. it works on cords but not on nodules. Not sure whether it is at all applicable to Ledderhose.

- a personal experiencce of cryosurgery is shown on http://www.dupuytren-online.info/dupuytr...s_research.html and on http://www.dupuytren-online.info/Cryotherapy.htm specifically.

Wolfgang

01/21/09 09:10
Wolfgang

not registered

01/21/09 09:10
Wolfgang

not registered

Re: Is there any hope for Ledderhose?

To debrr:

... I may have misunderstood, but I thought it said radiotherapy was only good for small, initial stage nodules???
A: Correct. Radiotherapy works best on the initial, small nodule. It does work sometimes also on larger nodules and it has little effect on cords.

I too am splinting my pinkie, pretty much day and night. When I quite wearing one, it becomes pretty painful with normal activity.
A: if you wear the splint permanently your finger might become stiff. That's why a night splint is preferable. After taking it off in the morning your finger will still be stiff and hurt a little but that will typically vanish in less than 5 minutes. Don't wear your splint permanently.

Wolfgang

01/21/09 17:11
jimh 
01/21/09 17:11
jimh 
Re: Is there any hope for Ledderhose?

From what I've read, I don't think it's correct to say that Xiaflex works only on cords. It would be more accurate to say that for Dupuytren's it has - so far - only been suggested for use on cords, not nodules. This is no doubt partly because nodules in themselves cause no functional problems, therefor insurers would be reluctant to pay for costly Xiaflex injections. I believe the tissue of the nodules is quite similar to the cords, and includes the same unwanted collagen, which would be attacked by Xiaflex.

In the case of Peyronie's there are neither "nodules" nor "cords" per se, but formations of the same tissue which in this context are called "plaques". In frozen shoulder, there is yet another form of unwanted collagen. Both have been named as targets for Xiaflex.


01/21/09 18:04
wach 

Administrator

01/21/09 18:04
wach 

Administrator

Re: Is there any hope for Ledderhose?

Jim, Xiaflex or rather collagenase is an enzyme that dissolves collagen. That's what cords mainly consist of (and the Peyronie's plaque, too). Nodules consist initially mainly of fibroblasts. Xiaflex won't work on fibroblasts.

A old but good paper about the development of Dupuytren's and Ledderhose disease is the one from Luck http://www.dupuytren-online.de/downloads/luck.pdf . Specifically the sections on pathogenesis might be of interest here. He writes about nodules:
"The nodule, whether it is one millimmeter or several centimeters in diameter, is
histologically a focus of fibroblasts which, in the proliferative stage, resembles a
fibroma. At the onset, when the fibroblasts are young, the cells form a large portion
of the tissue and the collagen a minimal portion."

In the later development stage the amount of collagen increases and cords are formed as result of the frequent pulling on the nodule. Cords now consist to the most extent of collagen and that's where collagenase comes into play.

Wolfgang

01/21/09 18:22
jimh 
01/21/09 18:22
jimh 
Re: Is there any hope for Ledderhose?

That paper would seem to say that collagenase wouln't help early stage Dupuytren's nodules. But this paper (for which I can only view the abstract) says that as Ledderhose progresses, the tissue is increasingly made up of collagen fibers.

http://www.ncbi.nlm.nih.gov/pubmed/1399528

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fibroblasts   collagenase   information   dupuytren-online   Xiaflex   Radiotherapy   histologically   manifestation   Dupuytren   sophisticated   Wolfgang   nodules   development   collagen   Ledderhose   presentations   cryosurgery   proliferative   misunderstood   myofibroblasts