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XiaFlex Success Case
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05/11/2013 13:40
pia2some 
05/11/2013 13:40
pia2some 
Re: XiaFlex Success Case

cschieber:
Hi Dawn. Thank you so much for posting your pictures and detailing your experience. I was really considering Xiaflex as my next move but I don't know now after seeing the horrific flare it caused for you. :((((

Well, again, it's different for everyone. Some people have had wonderful success with Xiaflex. This is a very unpredictable disease and it manifests so differently in each person. I think you really have to do your research and then make a decision that is best for you. Every treatment out there has some risk involved. I don't regret trying Xiaflex. I needed and wanted to know if it would help me. There's no way to know for sure if the disease would have flared like that if I had not used Xiaflex. You know?

Now that I have found a doctor in Atlanta who was trained by Dr. Eaton and who has lots of experience with NA, that will be what we do next. Since I'm on the young side, this doctor and I have decided to try and hold off any more treatment for as long we can.

~ dawn

05/11/2013 14:39
LubaM. 
05/11/2013 14:39
LubaM. 
Re: XiaFlex Success Case

Dawn,
I am sorry the Xiaflex was not successful for you. Have you considered Radiation treatment (RT) for your left hand? From the pictures you posted, it seems that your left hand is at the right stage now for RT, just dimpling and nodules.. no cords. My left hand looked just like yours when I did RT in November of 2009.

I have Dupuytrens in my right hand pinkie and had two NA procedures for the PIP joint. Unfortunately both times the contraction returned to the pre-NA degree within six months. I have considered Xiaflex, but I am turned off because of some of the negative posts here, although the reaction and success to the various treatments are so different for everyone.

When my left hand developed nodules and dimples and I had clear indication of active disease in my left hand (i.e. burning, itching, tightness) I decided to try RT. At the same time, I did RT on my left food that had developed two hard, marble size nodules, also constant burning and itching.

The RT was very successful on my foot. To this day, the nodules are more than 90% gone...The nodules on my left hand are mostly gone, some have shrunk, the itching and burning has stopped, and I can open my hand much wider and it is less tight. There are no new nodules in the RT treated area. Unfortunately I started to get a contraction of the PIP joint of the left pinkie in the last few months, but the rest of the hand is still very good, and I feel that the RT was worth it.

05/11/2013 17:09
bigm100d 
05/11/2013 17:09
bigm100d 
Re: XiaFlex Success Case

Boy Dawn, I had no idea this drug was so powerful to work into your wrist and up the arm. There must be a whole lot they don't know about it still. Thanks for sharing.

The injections for me were local bee sting type pains, it did hurt a lot more than bee stings while doc was sticking me.
The manipulation didn't hurt anywhere near the injection level.

I'm going to watch progression in both my hands much more carefully thanks to hearing your experience.

Marty

05/11/2013 17:43
pia2some 
05/11/2013 17:43
pia2some 
Re: XiaFlex Success Case

LubaM.:
Dawn,
I am sorry the Xiaflex was not successful for you. Have you considered Radiation treatment (RT) for your left hand? From the pictures you posted, it seems that your left hand is at the right stage now for RT, just dimpling and nodules.. no cords. My left hand looked just like yours when I did RT in November of 2009.

I have Dupuytrens in my right hand pinkie and had two NA procedures for the PIP joint. Unfortunately both times the contraction returned to the pre-NA degree within six months. I have considered Xiaflex, but I am turned off because of some of the negative posts here, although the reaction and success to the various treatments are so different for everyone.

When my left hand developed nodules and dimples and I had clear indication of active disease in my left hand (i.e. burning, itching, tightness) I decided to try RT. At the same time, I did RT on my left food that had developed two hard, marble size nodules, also constant burning and itching.

The RT was very successful on my foot. To this day, the nodules are more than 90% gone...The nodules on my left hand are mostly gone, some have shrunk, the itching and burning has stopped, and I can open my hand much wider and it is less tight. There are no new nodules in the RT treated area. Unfortunately I started to get a contraction of the PIP joint of the left pinkie in the last few months, but the rest of the hand is still very good, and I feel that the RT was worth it.

Well, I do have two large cords in the left hand. They are not in the fingers, though. If you look at the point where the pitting is the worst, there are two cords that go from that point down toward my wrist. There is a bit of a cord going up towards the pinky but it hasn't progressed much. As of now, no fingers are involved. The hand doctor and I discussed radiation and she did agree that both hands are well past the point where RT would be effective. I really think NA is going to be my best choice.

My body is a mess when it comes to scar tissue. I've had numerous surgeries where scar tissue created more problems after the surgeries. We're concerned that doing NA may leave scar tissue in my hand. So the idea is to not use NA until it's absolutely necessary. I've just turned 50 and have had DD for 8 years. I want to be able to use NA for years to come and that's why we need to be cautious with using it to often - the scar tissue problem.

~dawn~

05/11/2013 17:47
pia2some 
05/11/2013 17:47
pia2some 
Re: XiaFlex Success Case

bigm100d:
Boy Dawn, I had no idea this drug was so powerful to work into your wrist and up the arm. There must be a whole lot they don't know about it still. Thanks for sharing.

The injections for me were local bee sting type pains, it did hurt a lot more than bee stings while doc was sticking me.
The manipulation didn't hurt anywhere near the injection level.

I'm going to watch progression in both my hands much more carefully thanks to hearing your experience.

Marty

That was one of the items the literature talked about and also my hand doctor talked about. The drug does travel out of the hand once it's injected. The idea is that the lymph nodes in your elbows and armpits will halt the progression of the drug. My elbow was as sore as my hand. It was the lymph nodes that had swollen and were very tender. At least I knew they were doing their job by stopping the migration of the drug. lol

You can see the bruising of my entire arm in this picture. It was literally red and purple right up to the line at my armpit. Weird.


~ dawn

05/11/2013 17:57
LubaM. 
05/11/2013 17:57
LubaM. 
Re: XiaFlex Success Case

Dawn,
Thanks for posting the picture... it is postings like these that scare the heck out of me and turn me off Xiaflex, for now... and also, because the drug is fairly new, there are no long term results studies...so if the recurrence rate is not MUCH better than for NA, I think I will wait and stick to NA (which is less invasive) in the next years until I consider Xiaflex, I am too chicken to endure pain or swelling of this kind.

Edited 05/11/13 20:59

05/11/2013 18:07
pia2some 
05/11/2013 18:07
pia2some 
Re: XiaFlex Success Case

LubaM.:
Dawn,
Thanks for posting the picture... it is postings like these that scare the heck out of me and turn me off Xiaflex, for now... and also, because the drug is fairly new, there are no long term results studies...so if the recurrence rate is not MUCH better than for NA, I think I will wait and stick to NA (which is less invasive) in the next years until I consider Xiaflex, I am too chicken to endure pain or swelling of this kind.

~ dawn

Again, this is just my own opinion ... but I feel the same way. This drug is too new and there are no long term studies on the effects it may have on the body down the road. And no, I don't trust the FDA. lol. Just in the past few years I've been pulled off drugs because the FDA has taken them off the market. New drugs that simply were pushed through too quickly. Then later they discover that the drugs do cause harm. I'd much rather see what happens with Xiaflex over the long run. I just couldn't do the injection again for several reasons, but that was the big one. I was already thinking about that before the disease took off and I began wondering if the injection exacerbated it. It is scary to think about putting a drug that powerful into your body.

05/11/2013 21:29
Lanod 
05/11/2013 21:29
Lanod 
Re: XiaFlex Success Case

pia2some:

My body is a mess when it comes to scar tissue. I've had numerous surgeries where scar tissue created more problems after the surgeries. We're concerned that doing NA may leave scar tissue in my hand.

~dawn~

Dawn - thank you so much for sharing your experiences with such clarity. This is most helpful.

What do you mean when you say that your previous surgeries created scar tissue related problems? Do you mean that you suffer hypertrophic reactions to surgery - where your wound heals – but then continues to overheal into thick red scarring? Hypertrophy, like Dupuytrens, is a hyperproliferative disorder but a scientific link between the two conditions has not been established, as far a I can see in the literature. However, you raise a really interesting point here. I wonder how many other contributors here are prone to such hypertrophic scarring following surgery or injury.

05/11/2013 21:38
LubaM. 
05/11/2013 21:38
LubaM. 
Re: XiaFlex Success Case

pia2some:




~ dawn

Again, this is just my own opinion ... but I feel the same way. This drug is too new and there are no long term studies on the effects it may have on the body down the road. And no, I don't trust the FDA. lol. Just in the past few years I've been pulled off drugs because the FDA has taken them off the market. New drugs that simply were pushed through too quickly. Then later they discover that the drugs do cause harm. I'd much rather see what happens with Xiaflex over the long run. I just couldn't do the injection again for several reasons, but that was the big one. I was already thinking about that before the disease took off and I began wondering if the injection exacerbated it. It is scary to think about putting a drug that powerful into your body.
Good luck when you decide to go with NA. I have done it twice on right pinkie and going for NA for left pinkie in a week even though it wasn't successful on right hand, but the procedure was side effect free for me, so I am willing to try again rather than chance Xiaflex.

05/12/2013 00:18
hammer 
05/12/2013 00:18
hammer 
Re: XiaFlex Success Case

Ive had everything but RT done to me and Its gonna come back,just when and where.Might be the other hand ,might be the feet,maybe the shoulder.It will be back and it will be pissed for messing with it.DD Calls the shots,we just try fix it as it shows up.Dont really matter which route you go.Its all temporary fixes.Might be a year,might be 15 years but something will trigger a flare sooner or later and it will be back.Dave

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