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Advice please re. RT for Dupuytrens, & the rest
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01/01/18 09:13
scumble 
01/01/18 09:13
scumble 
Advice please re. RT for Dupuytrens, & the rest

I'm British, 57, resident in South Korea for 14 years. Fibromatosis began with Peyronies 6 years ago, which is tolerable, then 2 years ago Dupuytrens started in LH ring finger between 1st and 2nd joint. Finger now contracted from 1st joint - not from the knuckle, I mean - at something like 25 degrees. Early last year Ledderhose appeared in sole of right foot, so I seem to have it all, though not very debilitating thus far. Excellent Korean surgeon of long acquaintance advises daily hot water and stretch (finger & foot, that is) and administered steroid injections to palm below the finger last summer. Precisely on the site of these injections nodules quickly arose, seeming to form a diagonal band, like that twisting between the joints of the finger, and I now wonder if the injections had a provocative effect, which is certainly how it seems. Perhaps I'm entirely wrong. But it's rapidly become painful to grip such objects as dishes, broom handles & steering wheels. I suppose cords may eventually form between the palm and the other affected area halfway up the finger. I'd be grateful for observations regarding any of this, and whether it may be wise to seek radiation therapy for the nodules in palm & foot, since they appeared recently. I understand that while it isn't really known how this works, it often does in early stages and malign effects have so far not been noted. I'll be putting this suggestion to my Korean doctor shortly. This year I'll be in the UK and may look for somewhere to purchase treatment if necessary - no longer being resident there - but perhaps there'll be some helpful information about this elsewhere on the forum. Incidentally, my ancestry is Norman-Irish and as a stonemason I once used power tools more or less daily, but only for a very few years. Many thanks for reading and Happy New Year.

01/01/18 09:59
spanishbuddha 

Administrator

01/01/18 09:59
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Since you have new and recent active nodule growth, then indeed RT may be the best option at this stage. It’s difficult to judge via an Internet forum but a radiologist experienced in treating DD or LD would advise. There are at least two private clinics in the UK offering RT, and they are listed on the website treatment pages http://www.dupuytren-online.info/radiotherapy_clinics.html The private cost per extremity is roughy £2500. That’s GBP. Your difficulty might be the length of time needed if not resident, as treatment is normally 5 contiguous days repeated several weeks later. Getting it on the NHS is also possible, but this will depend on where you live and could take many months, by which time .......Can you holiday in Germany, although the overall cost, treatment, lodging, holiday might be th same.

I have not heard of steroid injections provoking a flare, but who knows. Some Drs will treat new growth sore nodules with steroids mostly to reduce pain. The outcome as reported on here seems to be a mix of relief and none at all.

In passing I will mention that you should review the latest trials on Xiaflex for Peyronies; if not already it would seem to be well on the way to being an approved treatment.

01/01/18 20:23
BRIANB 
01/01/18 20:23
BRIANB 
Re: Advice please re. RT for Dupuytrens, & the rest

fyi ..

I had steroid injection six weeks prior to N.A. the injection made the nodule softer and smaller ..and because the nodule was in the finger ..and it was my pinkie it made the NA easier and more effective
While having the NA another injection into the nodule...
this was done 2009 still perfect ...the nodule is almost non existant ..and still wearing splint every night ..
PIP joint 95 degree contracture ..

Thank you again Dr. Eaton !

01/02/18 22:40
scumble 
01/02/18 22:40
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Since you have new and recent active nodule growth, then indeed RT may be the best option at this stage. It’s difficult to judge via an Internet forum but a radiologist experienced in treating DD or LD would advise. There are at least two private clinics in the UK offering RT, and they are listed on the website treatment pages http://www.dupuytren-online.info/radiotherapy_clinics.html The private cost per extremity is roughy £2500. That’s GBP. Your difficulty might be the length of time needed if not resident, as treatment is normally 5 contiguous days repeated several weeks later. Getting it on the NHS is also possible, but this will depend on where you live and could take many months, by which time .......Can you holiday in Germany, although the overall cost, treatment, lodging, holiday might be th same.

I have not heard of steroid injections provoking a flare, but who knows. Some Drs will treat new growth sore nodules with steroids mostly to reduce pain. The outcome as reported on here seems to be a mix of relief and none at all.

In passing I will mention that you should review the latest trials on Xiaflex for Peyronies; if not already it would seem to be well on the way to being an approved treatment.
Thank you for your prompt and extremely helpful response. I won't waste any more time in ascertaining whether RT is available where I am - or making arrangements as necessary in the UK or Germany. I suppose I should not be surprised at the expense. Will report back any useful results/discoveries.

01/02/18 23:03
scumble 
01/02/18 23:03
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

BRIANB:
fyi ..

I had steroid injection six weeks prior to N.A. the injection made the nodule softer and smaller ..and because the nodule was in the finger ..and it was my pinkie it made the NA easier and more effective
While having the NA another injection into the nodule...
this was done 2009 still perfect ...the nodule is almost non existant ..and still wearing splint every night ..
PIP joint 95 degree contracture ..

Thank you again Dr. Eaton !
Thanks for this. I suddenly find myself on a perpendicular learning curve. Perhaps I'll bump into Dr. Eaton on my quest.

01/04/18 12:03
scumble 
01/04/18 12:03
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Since you have new and recent active nodule growth, then indeed RT may be the best option at this stage. It’s difficult to judge via an Internet forum but a radiologist experienced in treating DD or LD would advise. There are at least two private clinics in the UK offering RT, and they are listed on the website treatment pages http://www.dupuytren-online.info/radiotherapy_clinics.html The private cost per extremity is roughy £2500. That’s GBP. Your difficulty might be the length of time needed if not resident, as treatment is normally 5 contiguous days repeated several weeks later. Getting it on the NHS is also possible, but this will depend on where you live and could take many months, by which time .......Can you holiday in Germany, although the overall cost, treatment, lodging, holiday might be th same.

I have not heard of steroid injections provoking a flare, but who knows. Some Drs will treat new growth sore nodules with steroids mostly to reduce pain. The outcome as reported on here seems to be a mix of relief and none at all.

In passing I will mention that you should review the latest trials on Xiaflex for Peyronies; if not already it would seem to be well on the way to being an approved treatment.

It looks as if RT specialists may be accessible here in Seoul. If that turns out to be so I will report further. Meanwhile have sent inquiries to clinics in UK/Germany.

May I ask one (or two) further questions? I forgot to mention that after the steroid injections four months ago I was advised to massage the area of the palm below the affected finger, which I duly did, continuously for many weeks. Might this not have provoked the 'flare?' The nodules now loom about 3mm above the former surface of the palm. Of course they would have been detectable to a specialist before the steroid was administered, though not to me. I knew that something was going on there, but no more. Which leads to my final question for now: is such a dramatic eruption usual - from there being nothing discernible to the layman to these painful bumps in a matter of some six weeks? If anyone has time to comment briefly I'd be very grateful. Thanks.

01/04/18 13:45
spanishbuddha 

Administrator

01/04/18 13:45
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Usually massage is not advised, at least hard massage, although one of our specialists in the UK has developed a protocol that he claims helps early cases. I often massage the nodules in my hands, less side to side friction, but pressure and not enough to cause pain.

It’s hard to say what happened in your case, but there are many cases of feedback about trauma causing a flare or surgery causing a flare, even Xiaflex. In my own case, post RT, I injured my hand by using the wrong tools for a DIY job, it hurt on the day I did it, and overnight a new and very sore nodule appeared, and subsequently another one adjacent to it. I was really annoyed with myself! Appeared overnight! A year and more later the nodules remain but are stable and not sore.

01/04/18 15:56
scumble 
01/04/18 15:56
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Usually massage is not advised, at least hard massage, although one of our specialists in the UK has developed a protocol that he claims helps early cases. I often massage the nodules in my hands, less side to side friction, but pressure and not enough to cause pain.

It’s hard to say what happened in your case, but there are many cases of feedback about trauma causing a flare or surgery causing a flare, even Xiaflex. In my own case, post RT, I injured my hand by using the wrong tools for a DIY job, it hurt on the day I did it, and overnight a new and very sore nodule appeared, and subsequently another one adjacent to it. I was really annoyed with myself! Appeared overnight! A year and more later the nodules remain but are stable and not sore.
Fascinating. Your story is familiar. I've injured myself countless times and if I'd known I was going to get DD might have been a bit less careless. Nor am I less accident-prone with age. Thank you for this. How differently the condition develops according to the individual and circumstances. I am glad that you are no longer in pain.

01/12/18 02:15
scumble 
01/12/18 02:15
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

scumble:
spanishbuddha:
Usually massage is not advised, at least hard massage, although one of our specialists in the UK has developed a protocol that he claims helps early cases. I often massage the nodules in my hands, less side to side friction, but pressure and not enough to cause pain.

It’s hard to say what happened in your case, but there are many cases of feedback about trauma causing a flare or surgery causing a flare, even Xiaflex. In my own case, post RT, I injured my hand by using the wrong tools for a DIY job, it hurt on the day I did it, and overnight a new and very sore nodule appeared, and subsequently another one adjacent to it. I was really annoyed with myself! Appeared overnight! A year and more later the nodules remain but are stable and not sore.
Fascinating. Your story is familiar. I've injured myself countless times and if I'd known I was going to get DD might have been a bit less careless. Nor am I less accident-prone with age. Thank you for this. How differently the condition develops according to the individual and circumstances. I am glad that you are no longer in pain.
Here in Seoul I've consulted both a retiring hand surgeon and an oncologist who had each taken the trouble to read what DD literature they could find. The condition being rare here they knew nothing about indications for RT; i.e. where tissue development is recently active. They wish to study the protocol and learn as much as there is to know. Prevailing wisdom on this forum I see is to avoid surgery until there is no other recourse. But my case seems unusual in having arisen first in the finger and not the palm. The collagen that formed two years ago - around the intermediate phalange only - has since hardened. The nodules recently extruding from the palm are still compliant. The hand surgeon, experienced in the removal of such tissue, believes that surgery to the finger is required nevertheless before further contraction occurs, when it will be more difficult to perform. I would be grateful for comments.

The oncologist proposes MRI pre. RT to locate present sites of nodule growth. He accepts that in Europe this is not usually needed but techniques and processes are different here. As I have Ledderhose in addition, aggressively active, the co-operation of a foot specialist may also be required, but that is for his discretion. In any case, thanks to the curious and amenable Koreans, the necessity of a journey to Europe might be avoided. I will report on further progress, costs etc.

01/13/18 10:46
scumble 
01/13/18 10:46
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

If I may repeat this particular question, having searched forum. Onset of Dupuytrens two years ago was a band or cord along the front of the intermediate phalange (only) of the ring finger, which I have said is contracted at 20-30 degrees from this point upwards, not from the base. Nothing as yet on the proximal phalange, nor the palm until nodules grew there two months ago. So nothing yet between the two sites on the palm and centre of finger. RT is booked. But in regard only to that isolated section of finger, would caution be advised as to proposed fasciectomy by my hand surgeon, who assumes further contraction will later hinder the task? My inference is yes; would anyone agree?

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