Hi Debbie,

From what you’ve said, your DD sounds very active. Years ago, my Aunt told me her contracture began about 3 months after she noticed the first painful nodule in her right hand. After her first surgery, the disease got even worse. I’m not sure they even did NA back then. Because of her multiple surgeries, her right hand is almost useless and her left hand isn’t much better. I know treatments have improved significantly since then; however, I was not willing to “wait and watch.” The growth and activity in my hand was so rapidly changing that RT was the appropriate action for me. I hope you’ve read all the information on treatments available on this site. Trust yourself, make a plan, and keep a watchful eye on your disease EVERYDAY. If you notice a pull or a tightening in your hand, see your doctor immediately. If you choose to do RT, remember, it is so much more successful BEFORE contracture.

Take care,

Lori

Debbie; I am not a woman and experiences with Dupuytren's do seem to vary a lot but I feel it might be worth making the point that this is a pretty benign disease. Certainly not something to get stressed about. Getting it for the first time when you are 64 suggests, to me, that it is not likely to be a big issue for you.

I am 67 (68 next week) and I have had the disease for more than 50 years. My case is chronic and in both hands and both feet yet I still go to the gym most days and play tennis twice a week.

The activity that you talk about is normal. I have had periods where that itchy creepy crawly feeling has been constant, then it goes away, sometimes for years.

My suggestion is that you do consider RT and if you get contracture get NA done. Its quick and simple with no recovery time required. Surgery should be avoided in my view.

The problem you face is the discussion with doctors. They know very little about the disease and in many places they will send you to a hand surgeon and hand surgeons do "surgery". Here in Australia most hand surgeons now recommend NA as a first step but that is a new development.

My advice is to read widely and make your own decisions.

Lori- Thank you so much for the info, it gives me some idea of a timeline although I understand it's different for everyone. After I posted to you the other day I realized how this is affecting me mentally and I made the decision to only look at it once a day for 5 minutes and otherwise get on with my life until I see the doctor.

Knowing the kind of person I am I can't see the "watchful waiting" working for me as a strategy. Once I get the official diagnosis I'm going to get a consult on RT and see what's involved and the logistics of getting to the hospital for multiple treatments. I have an important wedding in mid-June so I'm hoping this will wait until after that.

Edited 05/18/22 17:55

Debbie, I agree…you DON’T want this disease to consume all your time and energy! Remember, it’s only if you notice the slightest bit of pulling or contracture that you should act quickly, given that you are considering RT. That said, I hope you’ll put this out of your mind for the short term, and just enjoy the up coming wedding festivities. Of course, it’s easy for me to say this now! You remind me so much of myself…I tend to be a little bit anxious and I always want the answers to be crystal clear. Don’t let DD steal your joy.

Edited 05/18/22 19:51

DebbieGG:

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Thanks for your response. Since you've had this and have family with it could you tell me what is considered an "aggressive" disease progression? I know watchful waiting is a strategy but how would I know if my disease is progressing rapidly and if I have to act immediately? 6 months ago I had one nodule and now I have 2 (possibly 3) so to me that's pretty fast but I've read a lot about people where it stops for some period of time and starts up again. Is there any data on this?