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Advice needed if you please
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10/11/2012 13:32
eleven40 
10/11/2012 13:32
eleven40 
Advice needed if you please

I live in Danbury CT, am a 52 yr old male, and about 6 Mo. ago noticed a small (2cm) lump in my hand about an inch below my ring finger about a Month after identifying Lederhose in a single foot (3 cm, no pain or discomfort) My podiatrist said he had success with, and suggested I try PDL's transdermal verapamil 15% on my foot, so I figured since I had the ointment already why not try it on my hand, as the pharma co. claims it works for both diseases. (my GP confirmed this idea, and had also heard of this treatment)

6 Mo later no improvement, but the pharma co says I'm using 25% too little, so go 9-12 months. I see little about this drug's use on this site, so that is not a good sign!

After doing some research on this wonderful site and it's links, it seems I might want to consider getting ahead of my hand issue, as I have no contracture. The question I can't seem to get answered, though, is if only 1 in 20 who get Dup ever end up having a contracture, then does it make sense to go through this radiation procedure as an insurance policy?

I realize that once contracture begins, it will involve both NA and RT to straighten the finger and give the best shot at no reoccurrence.

Notice I am ignoring my Lederhose problem for now, as it seems less disfiguring and problematic than DUP, and I can apply most of the treatment options to it if needed.

Any advice out there that pertains to my situation? Also, anyone have experience with Dr. Andy Nelson's Head to Shoulder Center in Waterbury, CT? He is listed on this website for RA, but not RT (though he does list RT on HIS site)

I appreciate in advance any insight you may have.

Eleven40

10/11/2012 14:46
callie 
10/11/2012 14:46
callie 
Re: Advice needed if you please

You are at the stage (window of opportunity) where radiation might be beneficial. Does your insurance cover the procedure? Having Dupuytren's leaves a person the choice of many options. These options are different for each person depending on their individual situation. Importantly, choose your options with knowledgeable medical people. If you wait for contraction (and you are correct, it may not happen) choose people who have a background with Dupuytren's. If you end up with surgery as a choice, make sure it is a HAND surgeon. If NA is the choice, choose an experienced provider.

As far as LD, surgery is the very last choice. Topical creams do not seem to be effective. I think that foot care is the most important thing you can do. Do not do things that give you the "burning sensation" in your arches. Find shoes that work best for you.

Edited 10/11/12 19:28

10/11/2012 16:21
spanishbuddha 

Administrator

10/11/2012 16:21
spanishbuddha 

Administrator

Re: Advice needed if you please

Just to clarify, RT is only useful during the proliferation phase. This may be early when nodules first discovered, or many years later after a dormant period when the disease re-awakens, and even later still after NA or other straightening of a contracture if the disease recurs.

So it needs to be 'active' when you are treated by RT.

The professor in Germany uses a scoring system to decide whether to treat or not with RT. I don't recollect what is in that score but some signs of activity include: objective changes in the last 6 months, pain, tingles, 'crinkling', pins and needles, new nodules or pits, new areas of blanching, cord development. etc.

To record objective changes keep a weekly or monthly photo log with notes, and also take regular measurements of the outstretched hand, fingertip to fingertip, also hand flat on table if possible, amount of space under any fingers, or degree of wrist angle to be comfortable.

I play piano, no need for the measurements, a pianist soon knows when stretches become tight, or the fingers curl, but I did keep a photo log over six months and shared that with the professor.

10/11/2012 16:22
eleven40 
10/11/2012 16:22
eleven40 
Re: Advice needed if you please

Thanks, Callie,

I do have full up Anthem BCBS and read on this site that they do cover RT for Dupuytren's, (but havent checked yet)

I will pay attention to my foot care, I only mentioned that it is taking a back seat as it isn't really bothering me and I have a fire now under my butt with this concern with contraction and doing what I can early on.

I do appreciate your comments.

Eleven40

10/11/2012 16:32
eleven40 
10/11/2012 16:32
eleven40 
Re: Advice needed if you please

Thanks Spanishbudda,

For the info on proliferation, as I did not know about RT only during the active phase....I am paying close attention to my hand (as I spend 10 min twice daily deeply rubbing this verapamil in) and so far no changes..it's not larger or smaller.

I did start photos and measurements, but will now make them more "scientific" thanks to your info, and keep a photo log.

I plan on going to a hand specialist to have it looked over, as I need someone with more experience to help me judge it's development.

Thanks again.

10/11/2012 18:20
Lanod 
10/11/2012 18:20
Lanod 
Re: Advice needed if you please

Hello eleven40,

I your first post you say in regards to RT threatment: "The question I can't seem to get answered, though, is if only 1 in 20 who get Dup ever end up having a contracture, then does it make sense to go through this radiation procedure as an insurance policy?"

Can I attempt to answer this as follows:

1) Where did you find the '1 in 20' statistic?

2) In a German recent (this year) Phase 3 clinical study with >500 Dupuytrens patients and > 700 hands
( http://www.springerlink.com/content/m25w532366371juh/ ) it was found that in the no-RT control group 34% of patients who did not have contracture went on to develop contracture (Stage N to Stage I or greater) after a number of years (mean follow up of 102 months).

3) Of patients without contracture who underwent RT (30Gy radiation) only 3.5% went on to a contracture phase after the same mean follow up time.

4) Other studies indicate rather similar results.

So - in answer to your question - based on the above study - it seems like electing to undergo RT treatment in the early stsges of Dupuytrens will give you 10 times odds ( 34 to 3.5) of not progressing. Without RT you will have a 1 in 3 chance of developing contracture, not a 1 in 20 chance.

I am not an expert - I just read the scientific papers and the results are available for all to read.

Hopefully this goes part way in answering your query and I wish you the very best for the future..

10/11/2012 19:03
eleven40 
10/11/2012 19:03
eleven40 
Re: Advice needed if you please

Thanks, Lanod:

I do appreciate you taking the time to consider my question(s) and your response. Took me awhilem but I tracked down where i found the info and will post it below. There seems to be a large disparity between the German study and this Icelandic one...I too am a layman, but will continue to research this disparity, as well as the best course of action for me as best I can.

Thanks again....it is appreciated.

http://www.handcenter.org/newfile34.htm


it says:

What is the natural course of the disorder with no treatment? The disease often causes progressive contractures. Involved tissues become fibrous and rarely may develop cartilage or calcium deposits 3624996. The younger the person is when they first develop Dupuytren's, the more likely they will need surgery 11252689, and the younger the patient is when surgery is needed, the greater the chance for recurrence 10473157. Overall, finger contractures develop in about one in 20 people with Dupuytren's disease 10760640. If finger contractures develop, eventually, function is lost - but function and dexterity can be improved with correction of the contractures 12162983. Spontaneous regression is rare 1402277. Spontaneous regression of knuckle pads has been reported in children 2943155.

And the item in question, # 10760640, this is that link:

http://www.ncbi.nlm.nih.gov/pubmed/10760640?dopt=Abstract

10/12/2012 07:23
wach 

Administrator

10/12/2012 07:23
wach 

Administrator

Re: Advice needed if you please

Hi eleven40,

the 1 in 20 doesn't seem to quite match the data of the Reykjavik study. "Altogether 19.2% of the males ... had clinical signs of Dupuytren's disease. The prevalence increased with age, from 7.2% among males in the age group 45-49 years up to 39.5% in those 70-74 years old. The more severe form of the disease, finger contractures, was found in 5.0% of the men and 1.4% had required operation."

From this I would conclude that about 25% of the men with signs of Dupuytren's had developed contracture and about 7% had required operation. But the study also emphasizes the age effect. In the older age group the contracture is much more frequent and so is surgery. Using these data to prognose that very few people will experience contracture might possibly be misleading. Percentages strongly depend on the age composition of the sample and should maybe not be generalized.

The general prognosis would be that the earlier you develop signs of Dupuytren's the more probable is later contracture. People who develop their first nodule at the age of 80 (as my mother did) will likely never experience contracture. But even that is not suitable for an individual prognosis because contracture can develop within 1 year or take 15 years. Even for the same person one finger might never contract while the other contracts quickly.

Wolfgang

eleven40:
... Overall, finger contractures develop in about one in 20 people with Dupuytren's disease 10760640. If finger contractures develop, eventually, function is lost - but function and dexterity can be improved with correction of the contractures 12162983. Spontaneous regression is rare 1402277. Spontaneous regression of knuckle pads has been reported in children 2943155.

And the item in question, # 10760640, this is that link:

http://www.ncbi.nlm.nih.gov/pubmed/10760640?dopt=Abstract

10/12/2012 13:21
eleven40 
10/12/2012 13:21
eleven40 
Re: Advice needed if you please

Thanks Wolfgang,

I do see your point, and the German study seems to be a serious one.

Being 52 yrs of age, I do think I should consider the RT. I have cousin who is a radiologist so I can bounce the whole thing off of him. I am also going to see an orthopedic surgeon who has NA skills and a Dupuytren Treatment Center to get an evaluation of my hand.

Much thanks to you for your advice.

10/12/2012 14:41
callie 
10/12/2012 14:41
callie 
Re: Advice needed if you please

Check back and tell us what your appointments reveal. Thank you.

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