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How do the knuckle pads relate to the DPS?
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10/21/2009 23:34
ruby2zdy 
10/21/2009 23:34
ruby2zdy 

Re: How do the knuckle pads relate to the DPS?

Have you looked up Heberden's nodes? These occur in the distal joints of the fingers (if they're in the medial joints, they're called Bouchard's nodes). They start out with a little pain & swelling on either side of the joint & progress to a LOT of pain (especially if you hit something with your finger) and a LOT of swelling (hard). My first one started about 15 yrs ago & one by one other fingers followed. After the inflammatory course, which in my case lasts a year or so per finger, my bumps have s-l-o-w-l-y receded. Bone spurs can form under/in them, but the bumps themselves are, CONTRADICTORY TO WHAT MOST DOCTORS WILL TELL YOU, fibrous nodules that can be removed. So can the bone spurs, but, as we all know, bone spurs may grow back. What doctors will tell you is that Heberden's is a form of arthritis. Since arthritis is not reversible, and the joints where I've had H's nodes & it's subsided don't hurt when I bend them, I don't believe the arthritis theory. And recently I went to see a hand surgeon about my DC, and he agreed that H's is not arthritis & told me about the fibrous nodes.

I even had an argument with a doctor as we looked at an X-ray of my hand where I had an active H's node. You could see that the bone was normal but the outline of the skin was expanded. I pointed this out, but he just walked away.

10/22/2009 01:45
flojo 
10/22/2009 01:45
flojo 
Re: How do the knuckle pads relate to the DPS?

My RT did much more than I expected. I my palm was covered with nodules and I had minimal contracture that was mostly released by NA before RT.
I wanted RT to prevent further progression of Dups. I had 1.8g x 5 days and the same dosage the next week. Very little dryness and none of the other side effects that you read about. Maybe the protocol that caused those side effects was a much higher dose.
I never expected the significant reversal as I have had. Nodules gone or very small. Hand extends almost as much as the non-Dups left hand. No itchy/tingly feeling like it is progressing. That's the best thing, because it seems to me an indication that it was successful in stopping progression.
I had had Dups for a year and 9 months before RT. It was obviously progressing, but fortunately more nodules rather than rapid contracture.
I recommend consulting with someone who does RT. It sounds like Germany is your best bet at this time. The docs who do RT and NA are still few and far between in the USA, too.
Good luck!

10/22/2009 10:38
ClaireB777 
10/22/2009 10:38
ClaireB777 
Re: How do the knuckle pads relate to the DPS?

Thanks Lori
I have bought a copy of some research too and the outcomes reported there are really positive. They use a control group who were just observed while the main group was given RT. The article also reported that those who were under 60 and not treated tended to go on to develop worse symptoms. As I'm 46, I'm therefore really keen to go the prevantative route of RT if I can.
Would you happen to know what dosage you received as this seems to play a part in whether you get side effects? Also, what frequency and duration did you have the treatment for?
Many thanks for your comments!
Claire

10/22/2009 10:43
wach 

Administrator

10/22/2009 10:43
wach 

Administrator

Information on RT

Hi Claire,

have a look at this web site (left menu): click on "Radiation therapy" and selet one of the sub-pages. You find
- an overview on RT
- side effects
- addresses of clinics
- the latest literature (for free)

Wolfgang

10/22/2009 10:56
ClaireB777 
10/22/2009 10:56
ClaireB777 
Re: How do the knuckle pads relate to the DPS?

Hi Wolfgang
Have done as you suggest. Could you tell me what the difference is between X-ray treatment and Electron beam treatment?
Many thanks

10/22/2009 11:02
ClaireB777 
10/22/2009 11:02
ClaireB777 
Re: How do the knuckle pads relate to the DPS?

Doh! I have found the link to the PDF of the research. Many thanks Wolfgang.
As you say, research is there free and I have just paid 5 dollars for the exact same report. Silly me...
Shows how good this forum is though. Well done all.

10/22/2009 11:23
ClaireB777 
10/22/2009 11:23
ClaireB777 
Re: How do the knuckle pads relate to the DPS?

To Ruby
Thanks for you post about the about the Heberden's and Bouchard's nodes.
I do have little lumps and a twist to the finger at the DIP joint of both forefingers which have been there for years now but don't hurt so could be Heberden's.
The nasty painful lumps on the PIP joints are the ones that keep getting worse. This morning when I woke up, both middle fingers ached like a bruise and were hard to bend but then loosened up.
Not sure if it's all DD related or a pic n' mix between the DD nodes and some arthritis really.

PS I can picture the scene of the doctor walking off. When I asked about the X-ray of my lump, the doctor started writing and the nurse nodded towards the door!

10/22/2009 12:35
lori 
10/22/2009 12:35
lori 
Re: How do the knuckle pads relate to the DPS?

Claire,

I was 53 when I had RT and am now 54. I had 3gy for 5 days in a row, skipped 6 weeks and back again for 3gy for 5 days. This is described under the RT treatment heading.

I have to say all looks good at this point. I can bend my fingers back without pain, got almost all my flex back, tightening is gone and I can press on the cord and nodule without groaning.

At this point RT was worth every penny I spent. Mine was aggressive in growth, 6 months or less from pain in palm to nodule and cord and tightening, dimpling etc.. I was not so fortunate as others to have it grow slowly.

Lori

10/22/2009 13:17
wach 

Administrator

10/22/2009 13:17
wach 

Administrator

Difference between x-rays and e-beams

Hi Claire, here are my two cents on this

- both, x-rays and e-beams, are radiation that deposits energy in the tissue.

- x-rays (that's the type of stuff doctors use to make pictures of your bones) are cheaper to produce and cannot be bundled. They need to be shielded from areas which are not to be treated, typically with a lead apron or mask or both (see the picture on the web site).

- e-beams = electron beams can be focussed and have a much sharper depth distribution. They are favoured in cancer treatment because damage of the tissue sourrounding the cancer can be minimized. E-beams are significantly more expensive.

- my impression is that e-beams, being concentrated, tend to do a little more damage to the skin (reddening) while x-rays do less damage. But that's just from what patients tell and I might be wrong.

- for historical reasons most of the reserach for Dupuytren's had been made using x-rays.

- Germany has still quite a few x-ray machines for treating Dupuytren's, in the US it seems to be e-beam exclusively. At the end of the day the effect on Dupuytren's is basically the same.


Wolfgang

Quote:



Hi Wolfgang
Have done as you suggest. Could you tell me what the difference is between X-ray treatment and Electron beam treatment?
Many thanks





Edited 10/22/09 16:20

10/22/2009 13:54
ClaireB777 
10/22/2009 13:54
ClaireB777 
Re: How do the knuckle pads relate to the DPS?

Thanks all.
I was worried about the side effects of RT, particularly the 'moist desquamation' but see that this only occurs if the total dose is over 30gy.
It does sound pretty horrible though - is it definitely not on the cards at these doses?
Claire

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