Sorka, welcome to the club.
You ask a very important question. Is it necesarry? This disease could stay like this for the rest of your life, or go ballistic and those nodules grow like crazy. Now is the time to watch your hands. My nodules stayed dormant for about 2, 3 years or longer. I did not know I had a problem until a cord with nodules formed and my ringfinger contracted a bit. It also started on my left hand, that's when I knew I had a problem.
Do you have hypothyrotism? Just wondering, seems a lot of people with this disease have thyroid problems. Also there has to be some genetic factor in DC. As you will read on this forum, you will learn that radiation treatment for early onset of DC seems one possibility, as it can slow or stops the progression in some. I am sure you will read plenty about it. I self-diagnosed in June, saw Dr. Denkler in Larkspur, CA, and it was confirmed. DC in both hands and lucky me, LD in both feet, but I am ok. I decided to go to Germany for radiation treatment. Will go back in December and I guess next year I can report if it worked or not.
Some say massage, use Vitamin E and take NAC. It might work for some, others are not so lucky.

Seems to me, this is one crazy disease. Not sure why there is not more research going on since a lot of people have it, and yet, I can guarantee you, going to your family Dr. would be a waste of time. I went to a Podiatrist for my feet and the guy had no glue. He even told me he has never seen this. Don't think so, I personally know 2 people who have it and they don't even know that they have it.

Anyway, don't read to much, it could be very scary. Just protect your hands, use cycling gloves, cut out those foam tubes for pipes and use them.

For me, rolling my hands with a marking pen workes great, gives my hands flexibility.

Good luck.

Christl

Sorka, good questions. Christl, good answers. My father has had the nodules on his hands for the last 40 years (he is 94) with no progression beyond that. He didn't realize that they were more than growing older.

I didn't have the nodules, but had what are sometimes called "dermal pits" that progressed to contraction and then surgery. Surgery was a complete success and the "pits" in the other hand have not progressed in 20 years. I do have the nodules in my arches, but have caused no problems in 10 years since I became careful with shoes and have not put abnormal strain on my feet.

Sorka,

I was lucky (I guess) in that my nodules grew so fast that the decision on whether to wait for treatment/RT was not an issue. My nodule went from a small pea size to a cord in the middle of my palm within 6 months. One thing I found really helpful was to take pictures of my hand about every 2 weeks. This enabled me to accurately compare my hand and if it changed on a weekly basis. By doing this I found that my nodule was infact growing, puckering was starting to occur and that I was beginning to have contracture. It made the decision as to whether to have treatment easy. After RT I took pictures of my hand that showed the nodule had disappeared, cord regressed and that my hand continued to improve for about a year. It has been over 2 years and no new nodules. RT was a success for me.

Lori

It is a personal decision, but for me, early treatment is a must. I hated the constant itchy, crawly sensations, weakening of my grip, and seeing more nodules popping up without end. There is no way that I am going to just watch it grow out of control without doing all I can to stop it or at least slow it down.

So far, no new nodules have formed in my palm since RT and contracting cords have been released with NA. I got a night splint after NA in July & that may be helping prevent tightening and it certainly doesn't hurt. I going to keep on staying on top of my DD as much as I can.

Research this site to learn all you can about RT, NA, and Xiaflex, the early treatments. Even then, it will not be an easy, but you'll have information to make a decision. If the early treatments aren't satisfactorily, you can always have surgery, but you may not be able to do the early treatments after surgery.