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Dupuytren's and Radiotherapy?

Original Post
Bryan Friesen · · Las Vegas, NV · Joined Oct 2016 · Points: 429

A hand specialist recently diagnosed me with Dupuytren's which you can see in the photo below. In the past couple of weeks, I began to feel a slight burning pain in the tendon just above the lump which is causing me concern.
The doctor said there are no interventions that can be done to slow the progress of the disease, but according to Dave MacLeod in his book "Make or Break" there are several options including Radiotherapy. This seems to be the least invasive? 
Here are my questions:- Has anyone else experienced tendon pain with Dupuytren's and did you find any remedies (cortisone, stretching, PT, etc)?- Has anyone had any experience with the interventions described in MacLeod's book?

Gail Blauer · · Gardiner, NY · Joined Jul 2008 · Points: 1,081

I am undergoing radiation treatment right now.  I have nodules on both hands, no cords or contractures.  I've been able to climb through the radiation treatments with no issues. Join the DART group on Facebook, you will find much discussion/research/resources to help you navigate your options.

Bryan Friesen · · Las Vegas, NV · Joined Oct 2016 · Points: 429
Gail Blauer wrote:

I am undergoing radiation treatment right now.  I have nodules on both hands, no cords or contractures.  I've been able to climb through the radiation treatments with no issues. Join the DART group on Facebook, you will find much discussion/research/resources to help you navigate your options.

Thanks for the info!

Christopher Smith · · Unknown Hometown · Joined Jan 2017 · Points: 0

I've been starting to wonder if I have this lately.  Need to actually get it checked out but it popped up on almost the same spot in my left palm over the winter.  I also have the joint bumps that tend to accompany it on the other hand and have the right European genetics that seems to be more prone to this.  Glad to see that I'm not alone I suppose if I do get diagnosed with that.

Evan LovleyMeyers · · Seattle · Joined Mar 2019 · Points: 330

I have nodules and cords in both hands my right is twice as bad as my left, and also gets painful stretch feelings above the bump.  I still have full mobility and my Dr. (Hand specialist) does not want to do any treatment untill I begin to loose mobility. Many treatment help but have a correlation with the Dupuytren's returning faster afterwards.

old5ten · · Sunny Slopes + Berkeley, CA · Joined Sep 2012 · Points: 5,816

the disease has active and dormant phases.  i usually associate burning sensations with an active phase.

amarius · · Nowhere, OK · Joined Feb 2012 · Points: 20

Saw latest research, thought Dupuytren's sufferers might be interested -

https://www.medpagetoday.com/rheumatology/generalrheumatology/98527 

A drug already on the market for 20 years effectively reduced nodules associated with Dupuytren's disease in a mid-stage trial, researchers said.

Patients receiving intranodular injections of adalimumab (Humira) showed significant declines in nodule hardness and volume over 18 months, whereas these remained stable or increased in a saline-treated control group, reported Jagdeep Nanchahal, MBBS, PhD, of the University of Oxford in England, and colleagues.

Nodule hardness as measured with a standard durometer decreased from 63 to 55 AU in the 70-patient adalimumab group, versus almost no change among the 70 controls (61 AU at baseline and 60 at 18 months), according to the researchers' paper in Lancet Rheumatology.

Adalimumab-treated nodules shrank in area from 28 to 18 mm3, while those injected with saline grew from 32 to 34 mm3. Nodule height also decreased with adalimumab by 0.9 mm; there was no change on average in controls.

Mark NH · · 03053 · Joined Feb 2013 · Points: 0

I have multiple nodules on both hands which started probably 25 years. Luckily no other issues and I climb and mountain bike pain free. On rare occasion I do have some minor pain. The last time I saw a hand doctor - as they seemed to get a bit bigger - he laid both my hands flat and said “I’m not doing anything as everything I could do is probably worse for you than where you’re at now. Which is no pain, no issues and no contractures.“ 

Josh Janes · · Unknown Hometown · Joined Jun 2001 · Points: 10,245

Hey Bryan,

I've posted about some of my hand issues at length in another thread, but to sum up I've had Dupytren's nodules in both hands for over a decade. At various times they've been worse than others, but usually only bothered me mountain biking and never enough to have surgery. Then I developed a trigger finger in my pinky which actually DID limit my climbing (due to pain). Eventually I had that operated on, and during the same operation had my worst Dupytren's nodule addressed through the same incision. The trigger finger is 95% better and that particular Dupytren's nodule (which was the worst) is way less noticeable. I'm sure they'll eventually come back, but I'm happy at the moment. Anyway, Bronstein in Summerlin did the surgery (and several of the treatments leading up to it). I recommend him.

bmdhacks · · Bellingham, WA · Joined Jan 2012 · Points: 1,753

I had my Dupuytren's treated with radiation many years ago causing a complete halt of progression. My insurance in the USA even paid for it. Highly recommended.

Bryan Friesen · · Las Vegas, NV · Joined Oct 2016 · Points: 429

Thanks, Josh and bmdhacks. I haven't had any further issues as of yet. I think I'll try to reach out to Bronstein at some point and get a second opinion if things start to get worse. I appreciate you sharing your experiences. 

bmdhacks · · Bellingham, WA · Joined Jan 2012 · Points: 1,753

One thing to note, I first visited a hand specialist who warned me that radiotherapy was "experimental" and said there was nothing to be done.  I had to search the radiologist out specifically to get the procedure, as it's not very common in the US.  For people in California, I used Alexander R. Gottschalk in San Francisco.

Andrew Redlawsk · · Boston, MA · Joined Mar 2015 · Points: 50
bmdhacks wrote:

One thing to note, I first visited a hand specialist who warned me that radiotherapy was "experimental" and said there was nothing to be done.  I had to search the radiologist out specifically to get the procedure, as it's not very common in the US.  For people in California, I used Alexander R. Gottschalk in San Francisco.

Hey man - appreciate you sharing your experience on this. Another year on, have you had any issues or recurrence?

I've got one nodule on my right hand that I think I unintentionally activated by trying to massage out what I thought was just scar tissue, so I'm getting it checked out next week but would love to have a worst case scenario game plan ready when I see the doc. Seems like RT may be a good option.

WF WF51 · · Unknown Hometown · Joined Oct 2020 · Points: 0

These are open access.

Dupuytren's Disease-Etiology and Treatment.

Ruettermann M, Hermann RM, Khatib-Chahidi K, Werker PMN.Dtsch Arztebl Int. 2021 Nov 19;118(46):781-788. doi: 10.3238/arztebl.m2021.0325.

Treatments for early-stage Dupuytren's disease: an evidence-based approach.

Nanchahal J, Chan JK.J Hand Surg Eur Vol. 2023 Mar;48(3):191-198. doi: 10.1177/17531934221131373. Epub 2023 Jan 13.

Dutch Multidisciplinary Guideline on Dupuytren Disease.

Kemler MA, de Wijn RS, van Rijssen AL, van Kooij YE, Ottenhof MPM, van Heijl M, Steenbakkers RJHM, Geise JBJ.J Hand Surg Glob Online. 2022 Dec 24;5(2):178-183. doi: 10.1016/j.jhsg.2022.11.008. eCollection 2023

Treatment Options for Dupuytren's Disease: Tips and Tricks.

Denkler KA, Park KM, Alser O.Plast Reconstr Surg Glob Open. 2022 Jan 27;10(1):e4046. doi: 10.1097/GOX.0000000000004046.

Guideline #1: Don't be a jerk.

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