I'm 51 and recently self diagnosed myself with DD and got a confirmation from a doctor on Monday. It affects both hands and both feet (Ledderhose). I have a question about the degree of aggressiveness of my case. It started about 8 years ago with one node under the arches of both feet (from the internet I identified them as fibromas). Nothing much changed with those for several years and they never progressed noticeably. A couple years ago an apparent callus formed on my right palm, which my girlfriend informed me is not a callus. Since then another definite node formed probably 1-2 years ago on my left hand. A year or so ago, a couple more nodes showed up in my left foot and perhaps in my right. Recently I've been very observant of my palms. I detected on new small node in my left hand a month ago. A cord extending out from the original node of my right hand starting forming in the last 2-3 months. It extends out about 8mm each side. Another very broad flat node has been gradually appearing over the last 6 months an my right hand. Detailed self examination of my hands, indicates a slightly to moderately thickened fascia at at three other spots on my left hand, these would not be noticed just casually, but I suspect they are early stages of node formation. I had to really examine over and over to come to that conclusion, they are so slight. No contractions yet. Is there some sort of scale for aggressiveness. I'd guess mine is moderately aggressive, but would like opinions.

My doctor never heard of Ledderhose and suggested I get an MRI, but my copay would be about $600 and I feel it might be a waste to do an expensive confirmation of Ledderhose.

Rocky:

---

Sorry, I can't offer any advice. I too am newly diagnosed but I seem to have a very fast progression of symptoms. I developed a single nodule. Then within 3 months I got another nodule. Then within a week I got 4 cords! This painless disease causes me pain when driving so I purchased a pair of fingerless gloves with padded palms. The gloves were for a specific activity like biking or something like that. Anyway, the doctor said we do nothing at this point. She said if and when a finger contracts by 30% that she could give me injections. Now I am wondering if a splint, particularly the Fixxglove, could be beneficial. Dupuytrens is something I never heard of and now I personally know three people who also have it. Best of luck to you. I can see where DD would affect working people. Fortunately, I'm retired.

Hi to anyone newly diagnosed,

Here is some advice I wish someone had given me when I was first diagnosed!

1. Educate yourself. Go to the home page of the International Dupuytren Society and read all the sections carefully. It will answer a lot of your questions, present and future. This site is incredibly valuable. If only some doctors would read it!

2. Go to a doctor who has a good deal of experience and current knowledge in treating Dupuytrens. If your doctor does not tell you the full range of available treatments, then it may well be that s/he does not have YOUR interests in mind.

Your doctor should tell you that NA is the least invasive procedure and the best first course of action. But NA requires additional medical training. Chemical injections that are said to "melt away" the cords and nodules, are easier to do however. So some doctors offer only injections because they are not trained to do NA.

According to this forum, German doctors no longer use these chemicals. That rang alarm bells for me. While some people on this forum report good results with these injections, others report some awful consequences.

The Dupuytrens Society has a list of NA qualified doctors. I believe it is worth travelling interstate and even internationally to avoid potential irreversible harm. Even if a NA qualified doctor deems a case too advanced for NA, it is comforting to know that this doctor has a good knowledge base for making this decision.

3. There is a strong case for nightly splinting, even before medical intervention. Look at this video. http://www.youtube.com/watch?v=882JB9cXDME.
I make my own silicon splints following the advice of other members of this forum.

4. Use the forum search engine. Before any treatment, read up on the experiences of other patients who have undergone that procedure, remembering every case is different. Don't rely on just one person's advice. You can contact forum members privately if you wish.

I hope this is helpful for someone who is newly diagnosed. I know it would have saved me a lot of grief.

Dep

Edited 09/07/15 05:47

Hi Dep,

your summary is excellent and will help newly diagnosed patients a lot. Thank you! Just one minor correction: collagenase is no longer marketed in Germany not because of medical issues. In Germany new pharmaceutical products must prove that they are offering an additional benefit if they are more expensive than current treatments. Because such proof was not produced by the manufacturer, the price of a collagenase treatment was not allowed to be above NA. That was far too low for the vendor and therefore the product was withdrawn from the market. That was a profit oriented decision by the vendor, not a decision by German doctors. BTW, this is similar to several other European countries, e.g. the Netherlands.

At a recent conference on Dupuytren disease in Groningen, latest research was presented. My overall impression with regard to NA and collagenase was that they can achieve about equal results and have equally long (or short) recurrence periods. It is therefore not very surprising that the vendor of collagenase did not perform any head to head studies with both treatments. The results probably would not help their marketing and therefore such a trial is considered a waste of money, if not worse. Unfortunately there are no other, independent institutions that would do such comparisons. For us patients it would be important to better understand pros and cons of all treatments.

Wolfgang

Dep:

---

Hi to anyone newly diagnosed,

Here is some advice I wish someone had given me when I was first diagnosed!

1. Educate yourself. Go to the home page of the International Dupuytren Society and read all the sections carefully. It will answer a lot of your questions, present and future. This site is incredibly valuable. If only some doctors would read it!

2. Go to a doctor who has a good deal of experience and current knowledge in treating Dupuytrens. If your doctor does not tell you the full range of available treatments, then it may well be that s/he does not have YOUR interests in mind.

Your doctor should tell you that NA is the least invasive procedure and the best first course of action. But NA requires additional medical training. Chemical injections that are said to "melt away" the cords and nodules, are easier to do however. So some doctors offer only injections because they are not trained to do NA.

According to this forum, German doctors no longer use these chemicals. That rang alarm bells for me. While some people on this forum report good results with these injections, others report some awful consequences.

The Dupuytrens Society has a list of NA qualified doctors. I believe it is worth travelling interstate and even internationally to avoid potential irreversible harm. Even if a NA qualified doctor deems a case too advanced for NA, it is comforting to know that this doctor has a good knowledge base for making this decision.

3. There is a strong case for nightly splinting, even before medical intervention. Look at this video. http://www.youtube.com/watch?v=882JB9cXDME.
I make my own silicon splints following the advice of other members of this forum.

4. Use the forum search engine. Before any treatment, read up on the experiences of other patients who have undergone that procedure, remembering every case is different. Don't rely on just one person's advice. You can contact forum members privately if you wish.

I hope this is helpful for someone who is newly diagnosed. I know it would have saved me a lot of grief.

Dep

Dep,

That summary was outstanding - best I've ever come across. Another advantage of NA as compared to Xiaflex is that it's a one-step (rather than two-step) procedure which is of critical importance to those of us who flinch at the very thought of any and all visits to the doctor - as necessary as they sometimes may be.