Dupuytren's Contracture (2022)
November 13, 2022 4:48 PM Subscribe
I'm pretty sure I have Dupuytren's contracture based on my symptoms, and the MRI readout.
I've only seen the online MRI results, I've not seen a doctor, but the symptoms and risk factors line up: male, age 50+, partial Scandinavian ancestry, etc.
The most recent Ask that I found was from 2016 which had a lot of good advice.
At the moment, it's only affecting my pinkie finger, and the bend is almost perfectly suited for typing. So no real work-related disability yet.
But it seemed to come on fairly quickly (last 12 months) and I've already had some practical issues: I can not do pushups, as I can't straighten my hand on the floor, and I've been clumsy when trying to hold things in that hand, etc.
I also have foot nodules which I've read are pathognomic for more serious disease.
My question: has anything changed in terms of treatment in the past 6 years?
I've only seen the online MRI results, I've not seen a doctor, but the symptoms and risk factors line up: male, age 50+, partial Scandinavian ancestry, etc.
The most recent Ask that I found was from 2016 which had a lot of good advice.
At the moment, it's only affecting my pinkie finger, and the bend is almost perfectly suited for typing. So no real work-related disability yet.
But it seemed to come on fairly quickly (last 12 months) and I've already had some practical issues: I can not do pushups, as I can't straighten my hand on the floor, and I've been clumsy when trying to hold things in that hand, etc.
I also have foot nodules which I've read are pathognomic for more serious disease.
My question: has anything changed in terms of treatment in the past 6 years?
According to someone I know,
"if you're diagnosed with Dupuytren's (hands) or Ledderhose (feet) your orthopedist will tell you there's no treatment until the contracture starts: this is 100% wrong.
If you listen to them, you'll lose the best chance you have of actually stopping the progression of the disorder: targeted, extremely high dose radiotherapy at stage 0 completely stops advancement in 85% of patients at a 10 year followup (and the 20 year data is coming up soon)
There are less than two dozen doctors in the US trained in the technique and most orthopedists don't know about it. Here's the list, slightly out of date but a good start:
https://www.dupuytren-online.info/radiotherapy_clinics.html
If you're under 65, have symptoms in both hands, and especially if you have a family history (I'm the fourth generation in mine), do whatever you can to get your ass to one of those experts for a consult ASAP."
posted by brainwane at 9:02 PM on November 13, 2022 [2 favorites]
"if you're diagnosed with Dupuytren's (hands) or Ledderhose (feet) your orthopedist will tell you there's no treatment until the contracture starts: this is 100% wrong.
If you listen to them, you'll lose the best chance you have of actually stopping the progression of the disorder: targeted, extremely high dose radiotherapy at stage 0 completely stops advancement in 85% of patients at a 10 year followup (and the 20 year data is coming up soon)
There are less than two dozen doctors in the US trained in the technique and most orthopedists don't know about it. Here's the list, slightly out of date but a good start:
https://www.dupuytren-online.info/radiotherapy_clinics.html
If you're under 65, have symptoms in both hands, and especially if you have a family history (I'm the fourth generation in mine), do whatever you can to get your ass to one of those experts for a consult ASAP."
posted by brainwane at 9:02 PM on November 13, 2022 [2 favorites]
More by that patient is on Twitter where she is @rahaeli, and on Dreamwidth where she is synecdochic.
posted by brainwane at 9:10 PM on November 13, 2022 [1 favorite]
posted by brainwane at 9:10 PM on November 13, 2022 [1 favorite]
52F with Dup and Ledderhose here. Feel free to memail me if you want to chat about it. Most of the good material and support groups are on facebook:
British Dupuytren's Society group (has people from all over)
Ledderhose specific group
DART (Radiation therapy group)
There is also a subreddit.
The main thing to do is educate yourself, as not all doctors are really up to snuff on this stuff (especially podiatrists). The British Dupuytren's Society has a lot of good info on their webpage, and if you do a lot of reading on those facebook groups you'll get a pretty good idea of the options out there. RT (Radiation therapy) seems to be the most successful one at the moment - same as cancer treatment radiation, just targeted at the cords and nodes in your hands. It's purpose is to stop your condition from progressing, and *maybe* shrink nodes or cords. It doesn't undo contracture. It isn't invasive and has basically no side effects (other than the small risk from the radiation itself). However, they can only do it when the condition is actively growing (it goes through dormant phases), when you see it progressing, and feel itchiness, pain, nervy twinges, that sort of thing.
NA (needle aponeurotomy) seems to be pretty successful at undoing contracture - physical breaking up of the cordage, so obvy more invasive.
Various injections also available:
Xiaflex seems to be mixed success.
Colegenese
Steroids
hyaluronidase
And way, way, WAAAAAY down the list as a last resort is surgery, because trauma often causes the nodules and cords to come back worse than before.
AFAIK, most or all of this also applies to Ledderhose. I'm in the middle of having my feet radiated for that.
What brainwane's friend said is correct. Many doctors will tell you wrong.
Also a lot depends on where you live, in terms of availability of RT, whether insurance will cover it, etc. The FB groups have lists of doctors who are knowledgeable about it.
posted by bluesky78987 at 6:56 AM on November 14, 2022 [1 favorite]
British Dupuytren's Society group (has people from all over)
Ledderhose specific group
DART (Radiation therapy group)
There is also a subreddit.
The main thing to do is educate yourself, as not all doctors are really up to snuff on this stuff (especially podiatrists). The British Dupuytren's Society has a lot of good info on their webpage, and if you do a lot of reading on those facebook groups you'll get a pretty good idea of the options out there. RT (Radiation therapy) seems to be the most successful one at the moment - same as cancer treatment radiation, just targeted at the cords and nodes in your hands. It's purpose is to stop your condition from progressing, and *maybe* shrink nodes or cords. It doesn't undo contracture. It isn't invasive and has basically no side effects (other than the small risk from the radiation itself). However, they can only do it when the condition is actively growing (it goes through dormant phases), when you see it progressing, and feel itchiness, pain, nervy twinges, that sort of thing.
NA (needle aponeurotomy) seems to be pretty successful at undoing contracture - physical breaking up of the cordage, so obvy more invasive.
Various injections also available:
Xiaflex seems to be mixed success.
Colegenese
Steroids
hyaluronidase
And way, way, WAAAAAY down the list as a last resort is surgery, because trauma often causes the nodules and cords to come back worse than before.
AFAIK, most or all of this also applies to Ledderhose. I'm in the middle of having my feet radiated for that.
What brainwane's friend said is correct. Many doctors will tell you wrong.
Also a lot depends on where you live, in terms of availability of RT, whether insurance will cover it, etc. The FB groups have lists of doctors who are knowledgeable about it.
posted by bluesky78987 at 6:56 AM on November 14, 2022 [1 favorite]
The Dupuytren Research Group has a page on treatments that should be up to date.
The lead researcher also has a 50-min video on YouTube (from 2019) that reviews everything about Dupuytren's: the symptoms, the risk factors, the treatments, and the research into prevention and cures. It's a few years old now but it still serves as an excellent explainer.
posted by cadge at 9:13 AM on November 14, 2022 [1 favorite]
The lead researcher also has a 50-min video on YouTube (from 2019) that reviews everything about Dupuytren's: the symptoms, the risk factors, the treatments, and the research into prevention and cures. It's a few years old now but it still serves as an excellent explainer.
posted by cadge at 9:13 AM on November 14, 2022 [1 favorite]
This thread is closed to new comments.
posted by Iris Gambol at 8:53 PM on November 13, 2022 [1 favorite]