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Diagnosed at 25, now 37, suggestions if/when should get treatment
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05/18/17 20:15
ask_you_dad 
05/18/17 20:15
ask_you_dad 
Diagnosed at 25, now 37, suggestions if/when should get treatment

So I've had this for the better part of 12 years, maybe earlier since the earliest I had it looked at the doctor just said it was a cyst. I had to have orthopedic surgery and at that point the doctor said it was dupytrens. He told me that I shouldn't worry about treatments as long as I could lay the back of my hand down on a flat surface and touch my finger against it.

I'd always been able to do that until recently, it's now slightly bent up and I can no longer touch the surface...but it's still very close to being able to.


My question is that since it's a slowly progressive ailment, should I wait until it interferes with my daily life or becomes an inconvenience or go ahead and look into trying out some sort of treatments. I've never really kept up with treatments since I was never really bothered by it, but are there any reliable options that won't result in causing it to spread or come back more aggressive?


Also, I've considered that if it ever got to the point where it was completely contracted and surgery/treatments weren't really an option if removal an option? Would there be chances it would come back on my pinky or other hand?

*edit - added pics

Edited 05/18/17 21:18

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05/18/17 22:24
Skippy 
05/18/17 22:24
Skippy 
Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

Gday Dad .. (diagnosed at 25 now 37) .. Im nearly 60 .. diagnosed at 56 .Dups in both hands.. Builder most of my life.Left hand has lots of chords and nodules but no contracture .. right hand lots of chords n nodules r/h pinkie contracted to 45 degrees in 3 yrs ..r/h ring finger following it.
Yes there are treatments... Xiaflex injections into chords and nodules..or needle aponeurotomy ..both of which wont cure DD but might keep it at bay for a while and poss help straighten starting curvature of offending pinkie.. When n if it progresses to past 30 to 45 degrees .. surgery is the usual surgeon recom procedure. (Open fasciotomy) which I would avoid at all costs as Dups is often bought on by injury ( of which surgery in a way.. is a type of injury.
I massage my hands...n use night splints to keep fingers as straight as poss in sleep mode.
Im in Australia... Xiaflex inj. here are costed at approx $2,500 a shot (.n Ive been told I may need up to 10 shots).(it Xiaflex isnt covered under the National health scheme yet).Looking at getting needle aponurotomy release v/soon, but it also may aggravate the DD. .. but it may break up exhisting cords n give me some release as my r/hand is slowly becoming crippled.
My suggestion is read up on Xiaflex and needle aponurotomy..as poss future aids but in the long run DD is not curable or preventable and its progression is different in everyone affected by it.
Good luck cobba 😊.... Skippy .....
(NTHN NSW AUSTRALIA ..land of the Dropbears )

05/18/17 22:55
spanishbuddha 

Administrator

05/18/17 22:55
spanishbuddha 

Administrator

Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

I agree with skippy, look into NA or Xiaflex. There's clearly a cord pulling the finger down and may well be treatable. It's up to you to decide when, but certainly before the contracture becomes a nuisance for you. NA usually has less risk of invoking a new or further flare and I personally would try that first. People do report that surgery elsewhere or on the other limb often provokes unexpected DD reaction.

Because of the slow progression it's doubtful if RT will be a benefit now, save that option in case it suddenly starts to progress at a faster rate, and with more pronounced symptoms of pain, soreness, cramps, tingling, etc. Watch for this after NA or Xiaflex.

Splinting after NA or Xiaflex, with a silicon scar sheet might keep it straight for a good while. Other people try things like gentle massage with vitamin E or magnesium oil, try them but cap your wallet ahead of time.

05/19/17 07:49
wach 

Administrator

05/19/17 07:49
wach 

Administrator

Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

Most people with symptoms of Dupuytren's never need any treatment but, as Spanishbuddha is suggesting, if your Dupuytren's flares up and grows rapidly you might consider radiotherapy

http://www.dupuytren-online.info/radiation_therapy.html

Otherwise, in case of contracture, you might try Xiaflex or NA. As Skippy already posted surgery might aggravate the disease and is more of a last resort.

Needle aponeurotomy (abbreviated as NA or PNF):
http://www.dupuytren-online.info/needle_aponeurotomy.html

Xiaflex (injection of collagenase):
http://www.dupuytren-online.info/dupuytren_collagenase.html

07/26/17 21:44
bstenman 
07/26/17 21:44
bstenman 
Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

I would recommend getting X-ray treatment for the hand(s) to slow or possibly halt the progression of the disease. I delayed getting this RT done for a year and it was a mistake and based on bad advice from my family medicine doctor.
After the RT the progression in my secondary hand was halted nearly completely but the Dupuytren's continued to progress in my primary hand that was also further along at the time of the RT.

Nothing at all to be gained by waiting on the X-ray treatment. In 2007 I had to fly to Germany to get the treatment but now it is available in the USA, though at considerably higher cost. The XRT in Germany cost me as an American citizen a total of 400 Euros for the 10 days of treatment. The second round I had done in the USA at a university medical center and the cost was over $13,000 of which I paid out of pocket more than $3,000.

08/25/17 05:15
ChrisDDat26 
08/25/17 05:15
ChrisDDat26 
Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

Hello all!

Background
Got my first nodule in my dominate right hand at 25 in 2016. Nodule located on pinky. Now 27 I still only have the one nodule with an indent above the nodule and a cord running down the tendon of my pinky. I have paid attention to this for 1 year noticing no change to little change. I am a social drinker 5-6 drinks a week sometimes none. Non-Smoker no other diseases and a healthy weight and an athletic build.

My question(s) (now that you have an idea on of my situation)

Should I hold off on RT? I understand some have gone 25 years with no change and others nodule cord and contracture in a short amount of time 3-6months. Most of the feedback from RT post therapy has been good or neutral very few reports of it doing more harm than good.

How do you find a Doctor who will do RT to treat early DD? I saw a list on this site but was hoping I could find a Doctor in IL. or IN. MidWest Area who accepts Blue Cross Blue Shield PPO. Saw a hand specialist and he didn't even mention RT as an option. Meaning he doesn't know anyone that does RT for early DD

I understand this is a new procedure in the US but has been done in Germany much longer. How much of a difference could one doctor over another actually make. Forgive my ignorance but RT seems like you set a dial point and shoot some x-rays.

I am concerned that it will progress rapidly at some point and by the time I can get in front of a doctor it will have progressed to a point that is not considered early stage DD

Photo attached

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08/25/17 05:52
kbr 
08/25/17 05:52
kbr 
Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

I have seen Dr. Dian (Dyan?) Wang mentioned. Rush University Medical Center. Chicago. It would be worth checking it out.

Edited 08/25/17 05:52

08/25/17 09:06
spanishbuddha 

Administrator

08/25/17 09:06
spanishbuddha 

Administrator

Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

RT is most effective when there are symptoms of activity, such as recent changes in nodule size, skin pitting, pain or soreness, pins and needles, tingles, etc. If not doing so already start a log tracking these symptoms with photos and you will have an objective record of the rate of changes. It's not clear from your post, despite your relatively young age how aggressive your condition is, and since RT is a one-off shot, or maybe two, you should hold off and have it done appropriately. Usually there is time to take a measured approach.

There are an increasing number of Radiologists in the US treating DD with RT, one of these with the experience is your best option if you don't or can't travel abroad. Or do the research on the protocol used and ask your radiologist to do the research too. There is a more comprehensive list of US 'experienced' Radiologists on the FB DART group.

Edited 08/25/17 09:08

08/27/17 03:48
atedio 
08/27/17 03:48
atedio 
Re: Diagnosed at 25, now 37, suggestions if/when should get treatment

I also have dupuytrens. For years my left hand had cords and some pulling. Then one day my right hand started acting up. Within a year, my right hand needed treatment. That was last year. My left hand is still the same. My left hand started at around 50. I'm 72 now. The only thing I do differently now, is I wear a night splint on both hands. Mine are called fixxgloves, but I am sure there are many that would work. They do not lend much in romantic endeavors, and sometimes I hit myself in the head, but my fingers seem ok.
tk

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