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Nodules on fingers
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09/05/2013 20:50
pia2some 
09/05/2013 20:50
pia2some 
Re: Nodules on fingers

This is the worst of the PIP joint nodules. It constantly hurts. It pulls the skin so tight it almost feels like the skin will split.



I just discovered a new cord today. The webbing between the right thumb and index finger literally tripled in thickness overnight. And there is a small pit that formed. Well, today there is a cord that runs from that pit in the web down and over to the base of the thumb. It's like a U shape. I had noticed my thumb felt tighter but hadn't felt a cord until today. My entire palm on that right hand is just full of cords. Almost every finger has a significant contracture. The ring finger is what was treated with Xiaflex, but you'd never know it now.



The index finger also has a cord running up the side of it so it's being pulled sideways under my ring finger.



My dream would be that all those cords and nodules could be treated at one time with one treatment. Ha. Fantasy, is more like it. lol

~ dawn

09/05/2013 21:19
wach 

Administrator

09/05/2013 21:19
wach 

Administrator

Re: Nodules on fingers

Comparing with the pictures on page http://www.dupuytren-online.info/dupuytr..._therapies.html your fingers look like stage 1 or 2 of Dupuytren's. That would be too late for RT (Rt would be good for the stage as shown in the topmost picture of that page). The stage 1 picture shows a nodule in the finger similar to yours.

I am in a similar situation as you are. I have a fairly big nodule just below the PIP (middle) joint of my little finger and a 45 deg contracture in the PIP Joint. I first had decided for surgery but then reconsidered and had Xiaflex. Yet the cords were difficult to find, certainly not prominent and my Xiaflex injection was probably close to an off-label use. Immediately after the manipulation the contracture was reduced to about 25 deg. I was able to maintain that for about a year with the help of splinting. Today the contracture is back to 45 deg.

Xiaflex helped to postpone surgery but it did bring no long term relief for me. So I am back to where I started.

Wolfgang

09/05/2013 21:33
pia2some 
09/05/2013 21:33
pia2some 
Re: Nodules on fingers

My pinky contracture is 58 degrees. That was the measurement about four months ago. My other fingers ranged from 30-45 degrees. Now the thumb is involved. I've not even described my left hand yet. lol

Also, the data shows that Xiaflex is not effective on pinky PIP joints. That finger seems difficult to treat all the way around. The cord from my pinky goes all the way to about 1" from my wrist. It is very puckered and pronounced. The other cords are not so pronounced.

I'm thinking the only real option for that pinky to release is going to be open surgery. If so, can the nodule be totally removed? Isn't it Callie who had her pinky done years ago? Callie, thoughts on mine?

Wach, it is frustrating to have gone through the Xiaflex and end up back where you started. Ugh. I know that feeling well.

~ dawn

09/05/2013 21:34
pia2some 
09/05/2013 21:34
pia2some 
Re: Nodules on fingers

Wolfgang,

Are you considering surgery now? I'm assuming NA isn't a good option for the pinky either?

~ dawn

09/05/2013 21:44
callie 
09/05/2013 21:44
callie 
Re: Nodules on fingers

I would have surgery with a very experienced hand surgeon. My results were very good, but I only had one finger involved (little finger at 90 degrees). It was pulling down the ring finger with it. I have no signs of Dupuytren's where I had the surgery almost 12 years ago. But, everyone seems to have different results as we know. Just don't let it get too bad before having something done.

Edited 09/06/13 00:45

09/05/2013 23:36
moondanc 
09/05/2013 23:36
moondanc 
Re: Nodules on fingers

wach:

I am in a similar situation as you are. I have a fairly big nodule just below the PIP (middle) joint of my little finger and a 45 deg contracture in the PIP Joint. I first had decided for surgery but then reconsidered and had Xiaflex. Yet the cords were difficult to find, certainly not prominent and my Xiaflex injection was probably close to an off-label use. Immediately after the manipulation the contracture was reduced to about 25 deg. I was able to maintain that for about a year with the help of splinting. Today the contracture is back to 45 deg.


Wolfgang

I've got six of those nodules, two without contracture yet-- arghhh. Did you splint for the entire year? What kind of splint? I'm going to have--two custom molded splints (I'll probably never sleep again ) for night and probably some small individual dynamic joint splints.

Diane

09/05/2013 23:43
pia2some 
09/05/2013 23:43
pia2some 
Re: Nodules on fingers

moondanc:
wach:

I am in a similar situation as you are. I have a fairly big nodule just below the PIP (middle) joint of my little finger and a 45 deg contracture in the PIP Joint. I first had decided for surgery but then reconsidered and had Xiaflex. Yet the cords were difficult to find, certainly not prominent and my Xiaflex injection was probably close to an off-label use. Immediately after the manipulation the contracture was reduced to about 25 deg. I was able to maintain that for about a year with the help of splinting. Today the contracture is back to 45 deg.


Wolfgang

I've got six of those nodules, two without contracture yet-- arghhh. Did you splint for the entire year? What kind of splint? I'm going to have--two custom molded splints (I'll probably never sleep again ) for night and probably some small individual dynamic joint splints.

Diane

I had custom night extension splints made. I have one for each hand. It was bizarre when I first started sleeping in them. lol. But I was sleeping with both hands tightly clenched at night. When I'd wake up in the morning, they would be swollen and incredibly painful and it'd take another few hours to really regain full function. With the splints, they keep my hands extended. When I first take them off, my fingers are a bit stiff and hurt, but that goes away within a few minutes. The splints won't keep my contractures from getting worse, but at least my hands aren't so useless in the mornings. My insurance covered most of the cost, which is good since they aren't cheap.

~ dawn

09/05/2013 23:46
moondanc 
09/05/2013 23:46
moondanc 
Re: Nodules on fingers

callie:
I would guess that these side effects from Xiaflex will never be made public. Too much money behind the product.

Not if I can help it! I actually sent a letter to the FDA when they were considering licensing Xiaflex--obviously it didn't do any good I'm on a crusade to get the side effects made public and as soon as I recover from my upcoming NA I'm going to start a thread here just for folks who had a bad experience and I'm going to do the same thing in the DD Facebook group. I only wish I'd gotten contact information from the folks back in the studies in 2007. Most of the folks I've spoken to started having problems a little more than a year after Xiaflex. Wonder if Dr. Denkler is keeping any sort of records?

Diane

Edited 09/06/13 02:53

09/05/2013 23:47
pia2some 
09/05/2013 23:47
pia2some 
Re: Nodules on fingers

These were taken a while back and before my pinky and other fingers were really bent. Fact is, the right hand splint needs to be remolded because it just doesn't work anymore since my finger positions have really changed. When I get in bed, I put them on and then nothing else can be done. lol. I do read in bed with my Nook and I can swipe the pages with my thumb, so that is good. But forget drinking from a glass or doing anything else that requires hands.





~ dawn

09/05/2013 23:50
pia2some 
09/05/2013 23:50
pia2some 
Re: Nodules on fingers

moondanc:
callie:
I would guess that these side effects from Xiaflex will never be made public. Too much money behind the product.

Not if I can help it! I'm on a crusade to get them made public and as soon as I recover from my upcoming NA I'm going to start a thread here just for folks who had a bad experience and I'm going to do the same thing in the DD Facebook group. I only wish I'd gotten contact information from the folks back in the studies in 2007. Most of the folks I've spoken two started having problems a little more than a year after Xiaflex. Wonder if Dr. Denkler is keeping any sort of records?

Diane

But how would they ever differentiate between what would have been a normal progression of the disease and what was a result of the Xiaflex. I mean, I am with you in that my disease was on the tame side until I had Xiaflex. It just seems it would be a difficult case to prove since the disease is so unpredictable anyway.

~ dawn

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manipulation   pia2some   non-weight-bearing   Xiaflex--obviously   reconsidered   appointment   Xiaflex   between   surgery   moondanc   dupuytren-online   Unfortunately   Wolfgang   contracture   contractures   Nodules   Probably   automatically   fingers   splints