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No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)
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11/07/08 22:26
drumhead 
11/07/08 22:26
drumhead 

No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)

NO ONE, and I've been to more than I can count, NO ONE, knows what to do safely and effectively about Ledderhose. Now, if you have Dup, you can have hand / finger surgery, but chances are, it will come back (as with me, 8 surgeries now, and need another that was worked on 2 years ago - SAME PLACE, SAME FINGER, PIP AND TENDON!!!!)

I was asked if you can develop other problems from Ledderhose. The answer is a 100% yes you can! Do I have the answer?

"No, but you CAN develop knee, shin and or hip problems from Ledderhose disease, especially if you overpronate to compensate as you walk or run or whatever. I have both feet with 5-8 painful nodules, I've had this crap for 20+ years. Also, I've had 8 surgeries on my fingers, dupuytrens, and I must say, I have NOT found anyone in Texas who knows what to do.

I DO know this - do NOT NOT NOT NOT have surgery on your feet. HORROR stories and lost limbs from this, don't listen to some of these so-called 'experts'. I've seen firsthand the results of trying to remove the nodules off the bottom of the feet = poor guy, they came back BEFORE HIS FEET COULD HEAL !!!!

Treat yourself, or try and find a DR would will give you mild analgesics, such as vicoprofen to help you deal with the pain and soreness (only when needed). I have found that the most effective way at this point in time to deal with this.

Just my humble opinion as a daily hurter.

"drumhead" = not an expert, but an expert on the problems from this :(

11/08/08 21:16
mylovelyladylumps 
11/08/08 21:16
mylovelyladylumps 

Re: No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)

Can't help but feel like I did the wrong thing having two very large Nodules removed!1

1. I feel like I had no choice as they grew so quickly, 6months to tumor size
2. They were making my toes go numb and and were effecting circulation in my always cold as ice feet
3. I work as a courier and went back to work 3 weeks after surgery to the bottom of my feet I needed to be able to get back to work without so much pain.
4. Again the health officials just told me they were locally aggresive and likely would return with a vengence! I knew going in that this may happen. I guess I was anxious to have them gone and out of pain.
Update: Had the damn things removed and there are three more possibly four! Some are growing right in a nice bed of scar tissue,Now what??

11/20/08 16:06
drumhead 
11/20/08 16:06
drumhead 

Re: No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)

1. Don't have it done AGAIN. You should be OK if you know what you are up against.
2. Try and find a doctor MD, specialist, that is FAMILIAR! with this. Very hard to do, trust me.
3. Ask them for mild analgesics and show them your records, feet, etc. I've explained TO the various docs I have seen and told THEM about this dilemma.
4. Two pair of THORLO socks and ASICS top-of-the-line running shoes seem to help. Buy the Asics 1/2 size larger than you usually wear in a reg shoe.
5. Go easy on any over-the-counter analgesics such as ibuprofen (stomach) and AVOID Tylenol (liver toxicity over time). Some have TY, but hidden.
6. If one doctor won't give you something that will kill the pain or soreness? Go to another doctor, specialist. That's the curse of this.
7. If all else fails? Do your OWN research into analgesics. You can find them. *** I am NOT suggesting meds to ANYONE, or suggesting such.
8. However = I have tried at least 10 different meds, separately and in combination, carefully! to see what does and DOES NOT work. Lots of work.
9. Don't give up. The reason there isn't a cure? This won't kill you, which is good, but I have determined the more you cut? The worse it gets.
10. Bless you and understand we are many and sometimes? You have to take care of yourself!!!! Look into Vicoprofen for the bad days. It works.

That being all said, by ALL MEANS, be responsible and CAREFUL! These Dr's and specialist and pharmacies are being monitored by how many Scheduled drugs they prescribe and fill, so some paranoia at every level. And, at first, I was very mad at them all. But, I realize, it's a very, DARK ROOM, as they don't see this condition, hardly ever. When you explain to the family doc? They go "huh". Then, you suggest, SHOW THEM, what works for you and they freak out " oh no, I can't give you that!" That is for pain. No kidding, Sherlock~~~~!!!!

Until progress, or a PROVEN surgical technique is shown repeatedly? Don't have FOOT surgery, only on the hand (knowing it could come back). MUCH safer on the hand, fingers, but I can't stress enough ==== NO FEET, NO FOOT SURGERY !!! I haven't seen ONE CASE that was 100% successful, but I HAVE seen / heard of lost limbs, nerve damage, permanent fascia removal, repeated surgeries, complications abound. Don't do it. Don't do it, no.

All these comments are mine, and mine only, and do NOT reflect any opinion other my own on this FORUM. Thank you, Wolfgang, thank you.

drumhead - hope some of this helps someone

12/05/08 02:05
jimh 
12/05/08 02:05
jimh 
Re: No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)

If you don't already know about the new drug Xiaflex, now in trials for Dupuytren's, start reading about it. It may well be effective for Lederhose as well. It's an enzyme that dissolves the type of collagen found in Dupuytren's and Lederhose. I expect it will eventually be tried for Lederhose, and it may at least soften and reduce the nodules without side effects.

12/05/08 09:03
wach 

Administrator

12/05/08 09:03
wach 

Administrator

Xiaflex not for Ledderhose

Jim, the chances that Xiaflex will work for Ledderhose are low. Collagenase only addresses contracture casued by cords and the issue with Ledderhose are typically aching nodules, not cords. That's why Auxilium has no trial and doesn't plan for any trials to test Xiaflex for Ledderhose.

Wolfgang

Quote:



If you don't already know about the new drug Xiaflex, now in trials for Dupuytren's, start reading about it. It may well be effective for Lederhose as well. It's an enzyme that dissolves the type of collagen found in Dupuytren's and Lederhose. I expect it will eventually be tried for Lederhose, and it may at least soften and reduce the nodules without side effects.




Edited 12/05/08 09:53

12/05/08 10:08
Randy_H 

Moderator

12/05/08 10:08
Randy_H 

Moderator

Off Label

There is always the chance that Xiaflex will prove effective in disrupting nodules in the hands and perhaps in the feet. Eventually someone MD will go off label give that a shot (so to speak). If it becomes clear that the stuff dissolves only diseased tissue and leaves the rest untouched, that would be a great proactive treatment.

12/05/08 10:22
wach 

Administrator

12/05/08 10:22
wach 

Administrator

Collagenase works on cords

Hi Randy, you are up early! I think the issue is actually that collagenase dissolves collagen and that's what the cords are essentially made of. That's different from nodules which typically consist of myofibroblasts. Collagenase is not expected to work on those. So Collagenase/Xiaflex works on cords, not on nodules. That doesn't exclude that some doctor will eventually try an off label use but I am not optimistic about the outcome.

Wolfgang

Quote:



There is always the chance that Xiaflex will prove effective in disrupting nodules in the hands and perhaps in the feet. Eventually someone MD will go off label give that a shot (so to speak). If it becomes clear that the stuff dissolves only diseased tissue and leaves the rest untouched, that would be a great proactive treatment.


12/05/08 17:00
jimh 
12/05/08 17:00
jimh 
Re: No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)

Xiaflex has already been successfully used for Peyronie's disease and is in Phase III trials now. The structures in Peyronie's aren't cords, they are described as "plaques", but the tissue is the same. Auxilium has also stated they intend to market it for frozen shoulder. It may be that the Lederhose nodules contain mostly cells (myelofibroblasts as) compared to Dupuytren's cords, but I think it's the collagen they produce that causes the actual problems.

I'm not an expert but I suspect Xiaflex will eventually be applicable to all 4 conditions. Our good friend Dr. Denkler agrees:

http://www.glgroup.com/News/Xiaflex-will...gery-15261.html

12/06/08 08:32
wach 

Administrator

12/06/08 08:32
wach 

Administrator

Re: No one, MD's, specialist, know what to do about Ledderhose disease (26 yr sufferer here)

Jim, I would never contradict Dr. Denkler! I just stated my personal view and time will tell whether Xiaflex is of any use for Ledderhose. Maybe, maybe not. I believe not but I may be wrong. Trying it for Peyronie's or Frozen Shoulder makes sense as both or collagen related.

Wolfgang

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Xiaflex   analgesics   dissolves   over-the-counter   sufferer   Lederhose   top-of-the-line   eventually   Dupuytren   Ledderhose   effective   nodules   Sherlock~~~~   Collagenase   complications   myofibroblasts   specialist   successfully   disease   myelofibroblasts