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Another Dupuytren in town...needs help!
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24.02.15 01:05
Katbel 
24.02.15 01:05
Katbel 

Another Dupuytren in town...needs help!

Hello Everyone,

I am in my fifties , from Vancouver, Canada.

My story with Dupuytren started almost 2 years ago when a small lump appeared on my right palm , just in the middle, closer to the ring finger tendon.
I showed it to my GP and she thought it was a cyst and said it will probably go away on its own as it came. I kept checking it and months after not only didn’t go away but changed from being soft to being a little harder and 4 months ago I noticed that my ring finger started to bend-contract and hurt to put my hand flat. I went back to my GP and she asked if I had a surgery to my hand (!?) Was I in such bad shape?
No, I didn’t …
it was still the cyst she told me not to worry about .
This is when I heard for the first time the word Dupuytren. She told me it was a mild case and
to come back when a more severe contraction begins and I can’t wash my face without poking my eye. OMG!
I told her I wanted to do something before getting “blind”. The good thing she told me was about an injection able to dissolve the nodules (now there are 2 big and one smaller). I’m still waiting to see a plastic surgeon ( the first available appointment is for May 12th)

I don’t have anyone in my family who had it, and don’t have any other ailment that can cause it
The only thing I had 10 years ago was a frozen shoulder after an accident.
It healed with the help of a lot of vit B5 , physio and nothing else

5 years ago I found a nodule in my right foot ..after reading this forum I know that it could be Ledderhose
Now there are 3 in each foot but they don’t bother too much as it did the first one .. so far!
Maybe because I walk and jump the rope for cardio?

Since the diagnose I’ve been reading a lot, trying something
and hoping to have some more information. I’m very disappointed and frustrated by finding a lot of pages ready to sell me something and confusing me even more , but this is part of the Internet game

I’m taking Bromelain 5000 m.c.u, turmeric, fish oil and stopped taking Glucosamine and Choindroitine , sigh
I tried to massage with Bio-Oil and magnesium oil and DMSO but I didn’t know if it was helping or getting worse and consequently stopped the massage. I also tried to take the B5 as it worked so well with the frozen shoulder but didn’t work at all, actually it seemed to make it worse.
I found that the bigger nodule is getting harder.
The only thing working is at night when I put my hand between my pillow and mattress to stretch it with the weight of my head. At least it doesn’t contract too much this way but I’m afraid it’s not going to last if I don’t keep doing it all the time.


I have seen some comments on the threads that some people never need treatment for their DD.
I was thinking of adding to my supplements L.Arginine and Quercetin because I read some article about it
http://www.dupuytrenfoundation.org/helpful-medications.html

I was also looking to find a way to stop producing the collagen III
http://www.fibrogenesis.com/content/pdf/...36-5-S1-S29.pdf
but it can cause more problems.

Thank you in advance if you take the time to read this and for any advice you can give me on how to proceed with treatment: I feel lost .

Best

Katbel

Edited 02/24/15 01:12

24.02.15 03:30
econn 
24.02.15 03:30
econn 
Re: Another Dupuytren in town...needs help!

The injection you speak of sounds like Xiaflex, a prescribed enzyme that breaks down collagen. To my knowledge, it is only used when the nodules develop into cords and cause a measurable degree of contraction in the fingers, usually 30 degrees or more. As you probably know, there isn't a cure (yet), but several procedures are available to cut, break or remove the cords for a period of time. I have had Xiaflex successfully done on my left hand and may have to have it on my right now, since nodules are growing rapidly but haven't formed cords ...yet. Some folks have reported good results with radiation therapy (RT) but results seem to vary a great deal. I would find a specialist familiar with this condition who does all DC surgeries, needle aponeurotomy (NA) and Xiaflex and proceed from there. Most gen practice drs do not know much about DD, luckily mine did and referred me to the right doc.

24.02.15 06:19
Sherise 
24.02.15 06:19
Sherise 
Re: Another Dupuytren in town...needs help!

This has helped the nodules in my palm. The dr must be experienced in DC .
I have used needle apprendectomy in the nodules in my palm. The hand is numbed and a needle is used to break up the collagen build up causing the nodules.

For thickened cords I just had my first XIAFLEX in my pinky. It hurts my finger feels like it on fire from the inside out and my arm pit is so painful I can hardly move. I've been icing both areas & pain meds don't help at all

I've read that what I'm experiencing are normal side effects of the drug made from a enzyme from soil to break up the thicken collagen that causes the finger cords to thicken and curl fingers.

Wadda do?? I am hoping this will help. There is no guarantee this DC can always come back.

I had the worst experience with surgery on one pinky. The surgery caused a flare & all my fingers are misshapen & frozen. Don't do surgery. It's not worth it. I was never warned of the possibility of a flare.

24.02.15 06:35
Katbel 
24.02.15 06:35
Katbel 

Re: Another Dupuytren in town...needs help!

econn:
The injection you speak of sounds like Xiaflex, a prescribed enzyme that breaks down collagen. To my knowledge, it is only used when the nodules develop into cords and cause a measurable degree of contraction in the fingers, usually 30 degrees or more. As you probably know, there isn't a cure (yet), but several procedures are available to cut, break or remove the cords for a period of time. I have had Xiaflex successfully done on my left hand and may have to have it on my right now, since nodules are growing rapidly but haven't formed cords ...yet. Some folks have reported good results with radiation therapy (RT) but results seem to vary a great deal. I would find a specialist familiar with this condition who does all DC surgeries, needle aponeurotomy (NA) and Xiaflex and proceed from there. Most gen practice drs do not know much about DD, luckily mine did and referred me to the right doc.

Thanks Econn for your insight: I guess I have cords between nodules.
Do they feel like a string- tendon inside your palm?

24.02.15 06:40
Katbel 
24.02.15 06:40
Katbel 

Re: Another Dupuytren in town...needs help!

Sherise:
This has helped the nodules in my palm. The dr must be experienced in DC .
I have used needle apprendectomy in the nodules in my palm. The hand is numbed and a needle is used to break up the collagen build up causing the nodules.

For thickened cords I just had my first XIAFLEX in my pinky. It hurts my finger feels like it on fire from the inside out and my arm pit is so painful I can hardly move. I've been icing both areas & pain meds don't help at all

I've read that what I'm experiencing are normal side effects of the drug made from a enzyme from soil to break up the thicken collagen that causes the finger cords to thicken and curl fingers.

Wadda do?? I am hoping this will help. There is no guarantee this DC can always come back.

I had the worst experience with surgery on one pinky. The surgery caused a flare & all my fingers are misshapen & frozen. Don't do surgery. It's not worth it. I was never warned of the possibility of a flare.

It sounds you went throughout a lot of scary procedures.
Thanks for sharing your experience
I 'll follow your advice of not doing any surgery: from what I read you are not the only one who had a bad experience
Wish you all the best !

24.02.15 09:40
wach 

Administrator

24.02.15 09:40
wach 

Administrator

Re: Another Dupuytren in town...needs help!

Hi Sherise,

the intensity of side effects of Xiaflex may vary from patient to patient. Yours seem to be quite extreme. Nevertheless the side effects ought to go away within a couple of weeks. You should discuss this also with your doctor.

A flare after surgery is unfortunately not that rare and your surgeon should have warned you about it. But it would just have been one more risk on the list and you probably would have had surgery anyway ... Our website warns about possible trigerring of flares http://www.dupuytren-online.info/dupuytr...ideeffects.html. This is a good reason for minimal-invasive treatments but your experience with Xiaflex shows that those are sometimes also quite inconvenient. For you maybe NA http://www.dupuytren-online.info/needle_aponeurotomy.html would be the best option next time.

Wolfgang

Sherise:
... For thickened cords I just had my first XIAFLEX in my pinky. It hurts my finger feels like it on fire from the inside out and my arm pit is so painful I can hardly move. I've been icing both areas & pain meds don't help at all

I've read that what I'm experiencing are normal side effects of the drug made from a enzyme from soil to break up the thicken collagen that causes the finger cords to thicken and curl fingers.

Wadda do?? I am hoping this will help. There is no guarantee this DC can always come back.

I had the worst experience with surgery on one pinky. The surgery caused a flare & all my fingers are misshapen & frozen. Don't do surgery. It's not worth it. I was never warned of the possibility of a flare.


Edited 02/24/15 09:42

24.02.15 09:51
spanishbuddha 

Administrator

24.02.15 09:51
spanishbuddha 

Administrator

Re: Another Dupuytren in town...needs help!

Hi Katbel

For early DD RT is your only option if it is active with new nodules, increasing nodules, other symptoms such as pain, itching, tingles, pins and needles. Also it sounds like you have a cord that is starting to contract? The collagenase injection is not used to dissolve nodules but to dissolve cords which are then usually manually broken (under anaesthetic). So it's difficult to say if you are at a stage ready for RT, if that's what you would want, but possibly too early for collagenase or NA. It might be useful to track rate of change by keeping a log or record with photos. That way you will have objective evidence that it is progressing, or what happens for most, going dormant.

Time to see an hand specialist, not GP, but do rule out surgery at this stage, and finding a hand specialist who knows about RT is difficult. Where are you? There is a list of clinics doing RT on the DC FB page to supplement the ones listed on this site. RT needs to be done at the right time and your record log would be helpful for this. Other options include a steroid injection, massage, TCM, but none of these have evidence from lots of people to be sure of their success, just the occasional anecdote. Yes stay away from the sites promoting VItamin E , DMSO and SSKI, no one on here ever comes back having tried it and says it helped.

Best wishes
SB

24.02.15 22:58
Katbel 
24.02.15 22:58
Katbel 

Re: Another Dupuytren in town...needs help!

spanishbuddha:
Hi Katbel

Time to see an hand specialist, not GP, but do rule out surgery at this stage, and finding a hand specialist who knows about RT is difficult. Where are you? There is a list of clinics doing RT on the DC FB page to supplement the ones listed on this site. RT needs to be done at the right time and your record log would be helpful for this.

Hi Spanishbuddha,

Thanks a lot for you answer!
I live in Vancouver, Canada and I'm on the waiting list of two plastic surgeons.
I looked for a RT in Canada and the only one is in Alberta
I will take photos, good idea
even if it's not so easy to get good ones of the palm.

Best

Katbel

Edited 02/24/15 23:00

25.02.15 06:45
Sherise 
25.02.15 06:45
Sherise 
Re: Another Dupuytren in town...needs help!

Still after surgery, needle appendectomy and xiaflex injection yesterday. 5-6 small injections in one finger. My finger is so swollen & hand it feels like it's going to bust open. It's painful & brused in pinky area . Xiaflex is a enzyme which was my last chance to eat thru the collagen built up on the finger cord and breakup the severe scarring from surgery. The normal side effects is extreme bruising, swelling and itching all over. No severe side effects or allergies have I experienced so far.

Next week go in for finger manipulation.The dr. Wanted to wait a week due to the severe scarring from hand surgeon.It hurts like a son of a gun. Still waiting and holding out for a positive result from XIAFLEX .i figure if it's used for penis DC straightening I have a lot of sympathy for the man who goes thru XIAFLEX. It's safe and a better solution than surgery. I decided if used for that then safe for a pinky finger. Yet never heard of a male using XIAFLEX for DC of the penis. I can't imagine.he must be kept in a self induced coma. I can't move my hand or barely move PERIOD. How could he walk. I am in a lot of pain , as each day goes by it gets a little better. Stay positive and let The Lord take charge. POSITIVE THOUGHTS !

Edited 02/25/15 06:50

26.02.15 23:16
callie 
26.02.15 23:16
callie 
Re: Another Dupuytren in town...needs help!

Just for the discussion, I had surgery 12 years ago on my 90 degree contracture little finger. The finger is still perfectly straight as before Dupuytren's. Absolutely 100 percent "fixed" with no signs of Dupuytren's. Incidentally, I had RT on the other hand (little finger) two years ago. The RT did not stop the Dupuytren's (they were nodules at the time) and that finger is now at 10-15 degrees contracture. The person who did the RT showed me his hand and he had surgery over 15 years ago and his hand was as mine ...very good. His other hand little finger was at about 50 degrees and he was ready to do surgery on that little finger.

Surgery shouldn't be ruled out. There are always exceptions to about every surgical procedure, but that shouldn't call for a "no surgery" commitment. That is a disservice to many people.

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