July 23, 2014

Ever heard of Dupuytren's Disease? (Update)

I originally posted this in 2008, when I was involved in a clinical trial for Xiaflex, a new treatment for Dupuytren's Disease. Most likely you've never heard of Dupuytren's and are not interested, but since I have more than 140,000 hits on a series of YouTube videos I posted about my experience, this bears repeating. I recently had the injection again, so the update is at the end.

In Paris.
The disease is named after Baron Guillaume Dupuytren, the surgeon who described 
an operation to correct the affliction in the Lancet in 1831.

About 20 years ago I noticed a nodule in the palm of my hand, just a little lump. It didn’t hurt but I was curious so asked my GP about it and he sent me to an orthopedist who said it was an inflammatory nodule of the palmar fascia. No big deal.
About five or six years later I noticed I could no longer flatten my hand, that a cord had started to form under the skin on my palm where the nodule was. and it was contracting my ring and middle fingers toward my palm.
2002:
I went to Dr. Thomas Wiedrich, a hand specialist, who diagnosed it as Dupuytren's Disease (also called Dupuytren’s Contracture), a condition where, even though the fingers can’t be straightened normally, it doesn’t inhibit movement, flexibility or strength. The degree to which the fingers curl varies, sometimes so much that it complicates everyday activities like grabbing large objects, putting your hand in your pocket, putting on gloves, etc. The doctor told me it was common in people of European descent and mentioned Russian Jews in particular (of which I'm one), and that it is genetic.
CLICK HERE for more information.
As far as I could flatten my hand
prior to the injection - 2008
The condition didn't bother me very much but over the years my finger contracted more and it became slightly inconvenient, but never painful. My hand surgeon referred me to an orthopedic surgeon who was heading up a study to test an enzyme injection, Xiaflex, that was in the third round of testing prior to FDA approval. Up until that time the only treatment for Dupuytren’s was surgery, which might or not be successful, and had a very long recovery. They had had good success with the enzyme injection up to that time and so I got on a wait-list to be involved in the study.
The doctor heading up the study here in Chicago (where I live) moved to Detroit and the study went with him but I stayed on the list thinking Detroit wouldn't be too far to travel for the benefit of this new treatment. But then the doctor left the study so it took more time to move it to various locations around the country. When they called to tell me there was a study in Rockford, IL (an hour and a half away) and asked if I still wanted to participate I said, “Absolutely!” and was number one on the list.
FALSE START IN 2007:

Finally, after several false starts and stops, the clinical trials began again and in October of 2007 I had my first injection. I wouldn't know if I got the placebo or the real thing until this particular series of trials were complete, but I was very excited. I had the injection on a Monday, my hand was bandaged completely and I was supposed to keep my fingers as immobile as possible. The next day when I took off the bandages my hand looked the same as it had before, which didn't bode well since they'd told me to expect bruising and swelling. I went back for the “manipulation,” which is when the doctor stretches the hand to break the cord. They told me this would hurt but because it was a clinical trial they needed to be sure the results were strictly from the drug so they could not use any kind of anesthetic. 
Well, the doctor stretched and stretched, and it hurt like hell but nothing “broke.” It was evident it wasn't working, so the doctor didn't keep trying (thank god). It looked like I was one of the "lucky" ones who got placebo but that wouldn't be confirmed until all the results were in and they were able to open the records. I had three injections (the amount provided in this trial) and the result was the same each time. Nothing.
THE REAL THING IN 2008:

After my third injection I had to wait until everyone in this round was finished and they opened the study. It was eventually confirmed that I had gotten placebo and so, finally, on June 16th, 2008, I went for my first injection of the Xiaflex.
The injection hurt, but was bearable and only lasted a few seconds. They wrapped my hand and sent me home, and on the morning of the 17th I was able to remove the bandages. My hand was bruised and swollen, which was a good sign. Then I went back for the "manipulation."
Excruciating. The doctor basically stretched the cord until it "popped" and then kept doing that until it stopped popping, about 5 or 6 times. I'm not someone to make a scene in public but I cried out a bit when he did that, much to my embarrassment. Picture the seam of a garment with all the little stitches and then picture stretching that seam until the stitches break. That's what it felt like. I could feel each time the cord broke.
I had gone alone for this, thinking it wouldn’t be that big of a deal, but it was very traumatic.
Fortunately that pain didn't last long. My hand was very sore after that but manageable.
Ouch!
It was swollen and tender for a while but not painful and after the swelling went down I could open my hand flatter than I'd been able to in ten years.
I had a month of recovery time and then I went for the second (of a possible three) injection. I went alone on Monday, July 14, 2008 for the injection but on the 15th when I went back for the manipulation my Bill went with me.
I knew something was up because I had more swelling than the first time, more bruising and it was more painful. I had hoped that it wouldn't hurt as much this time but I was very wrong on that score.
Bill stood to my left, holding my left hand and his arm around my shoulder. The doctor took my right hand and said, "Are you ready?"
"No," I said, "but let's get it over with."
There are not words to describe the pain. It was stunning. Much, much worse than the first time and I thought the first time was as much as I could bear. Again the doc kept stretching until the cord started popping and that first pop felt as if he'd broken a finger. I screamed. Out loud. So embarrassing. And then he popped some more and I was screaming (loud!) and crying, and my Bill was holding me so tight. He didn't know what to do. "Oh, sweetheart," I heard him say pityingly, through my fog of pain.
Gore Alert (not Al, the blood and guts kind)
While the cord was popping, so was the skin on my palm, and blood squirted out onto the doctor's lab coat. They'd warned me there might be a skin tear due to all the stretching. What I wasn't prepared for was a skin gash. I was just barely holding it together at that point. Everyone was very solicitous and feeling bad about inflicting so much pain (not that it stopped them from doing it). 

When it was over one of the doctors who was there just to observe said, "You deserve a lollipop after that," and I said, "I don't need a fucking lollipop. But if you have a morphine drip I'm all over it."
They treated the gash and then all the medical personnel left Bill and me alone for a few minutes. When they closed the door I just burst into sobs, out of pain, trauma and relief that it was over. I couldn't stop shaking.
Well, again they mummy-wrapped, gave me some antiseptic ointment for the gash and sent me home.
The morning after the manipulation.

It took about two weeks for the swelling and bruising to subside, and about three weeks for the gash to close up, and during that time it looked like the results were going to be really good.
A month later I went back for the 30-day follow-up and to get the third injection, if I so chose. There were about three minutes when I actually considered it because I could see there was still a cord there and I still couldn't stretch my fingers out completely straight. But when I was in the doctor's office and they asked if I wanted to go ahead with it I just could not go through that again.
So, while what I ended up with is sooooooooo much better than when I started, it's not perfect. But you know what? It'll do. It's really damn good and I'm very happy with the results. And if the condition worsens again over the years it's my hope that by that time the FDA will have released it into the market and I'll get it done under anesthesia.

These pictures were taken in September 2008, two months after the second, and last, injection. Pretty good, huh?

Here are the links to some YouTube videos I did while I was in the process - not of the injection or the manipulation, just the results. 
Video 1  
Video 2  
Video 3  
Video 4  
Video 5  
Video 6  
Video 7

UPDATE 2014
It's now six years after I was involved in the clinical trials. The cord continued to contract my finger during that time.
As far as I could flatten my hand 
As straight as my finger would go
Now Xiaflex is on the market and the process is done after a numbing anesthetic, so I opted to go through it again.
Day after manipulation
I fully expected it to be a painless procedure. I was wrong. But it was much less painful than it was during the clinical trials, without anesthetic. Just not completely pain free. The anesthetic numbs the palm, where the cord is, but not the top of your hand, where all those teeny tiny bones are, and when the doctor manipulates the hand to break the cord he has to press on all those little bones. He told me he could be more aggressive in breaking the cord because of the anesthetic, and believe me...he was. But I'm a big girl so I took it like a man.
Anyway, it's over quickly.
Day after manipulation

1 week later


1 week later
3-1/2 weeks later

I'm very happy with the results. The recovery is easy and quick, unlike the surgery which is a very long recovery time and rehab.
I was encouraged to use my hand as much as possible after the procedure - it aids in the healing - and I wear this very high tech brace at night to keep my finger straight. Otherwise I use my hand normally.
The end. I hope.

My doctor is Dr. Thomas Weidrich at Northwestern: 312.337.6960
.


27 comments:

Muzzlet said...

OW OW OW OW OW OW OW OW!!!!
You poor baby!
Maybe they couldn't give you anesthesia, but couldn't you at least had a couple martinis before!?!?!

Love, J

sb mitchell said...

Thanks for your comments on the injections.
I first had surgery for Dupuytrens in the mid seventies. I have had 4 surgery s and 3 NA(proceedures--two done in Paris by one of the founding physicians of NA) over 30+ years.
The needle used in NA has a numbing agent therefore it is not a painful as the injection you describe.
At 66 I will try the injection when available with anesthesia. Surgery by an experienced hand surgeon works best in my experience but it is expensive ($10,000 or so) and recovery time is several months.
My best -/good luck-Sam

Tim said...

What a perfect description - I have the same thing and went through the clinical trail in Rockford also. I had six injections - was lucky enough not to get the placebo - and go back next week for a follow-up exam. I still have one cord that I'll get injected and snapped once it's FDA approved, which will hopefully be in 2009.

Bergie said...

Yikes! Sounds very painful but encouraging.
Thank you so much for sharing your experience. I had surgery 3 years ago on my pinky. The recovery was awful and within 3 weeks of the surgery, many new nodules "popped" out on both hands!
I am keeping my crooked fingers crossed that they speed up the approval process for these injections so that I can avoid more surgery.
All the best.

Poppi said...

wow, the operation did not look so bad but from the way you described it sounded very very painful. funny about the hands. i broke a thumb once - sports related - and the doc said wait three weeks and let it settle in. then i talked to atheletes who have had finger surgery. it did not sound good. when i went back three weeks later, miraculously, the bone had fallen in place. thank you dear lord!

Geralyn said...

Hi Samantha, It was nice to meet you Thursday in Rockford. My name is Geralyn and my husband Steve was in the study. I read you blog and it was such a familar story that we could have written it martinis and all!! Will let you know when we hear about the date of the commerical for the dupuytren's miracle drug!! (Fox News). My husband works downtown, my my oldest son also works and lives downtown. So if you ever want to get together for drinks drop us an email (gsiptrott@smow.org). Again a pleasure to meet you. Geralyn

Stephen said...

Wow Samantha,
I just watched your You tube videos and could feel the pain...you were very brave.
I am considering the enzyme treatment myself when it is available.
Best wishes.

Tim said...

Hi Samantha,
Don't you love the internet. This popped into my Google news alerts tonight. We met in Rockford last month as we finished up the clinical trial study. Hope you are well - good luck to all with Dupuytren's, and if possible, be thankful we don't have something worse.

Samantha Hoffman said...

Tim,
Yes, the internet is an amazing thing. I didn't realize my YouTube videos were on the Dupuytren Society (didn't know there was a society) web page until someone came across it and emailed me. Here's the link to that: http://www.dupuytren-online.info/dupuytren_collagenase.htmls.
All is well, and yes, I am grateful that Dupuytren's is all I have!
Samantha

Warren Allen warren.allen@cox.net said...

Thank you, Samantha... for your detailed description of the collagenase treatment -- which I hope to have done. I sent you an e-mail too, but now I see that you had the procedure done as part of a clinical trial

I would love to know if anyone knows of a doctor anywhere who offers this treatment (Canada?, Mexico?)

warren.allen@cox.net

Linda said...

Samantha, thanks for your YouTube videos and these comments that explain in such detail your experience. I so appreciate your openness and willingness to share! I'm a mom of 5, only 41, and diagnosed 6 months ago. I'm already looking for options should my Dupuytren's progress further, and this procedure gives me hope. I'm in southern Ontario, close to both the US border and Toronto. I'd love to know when this is FDA approved and can be used under anesthesia or if a Canadian doctor offers it.
Yes, sadly there are many worse things than this disease. Even in my thankfulness that this is all I have, I would still be grateful to keep the use of my hands to care for my family, friends, and one day, grandchildren.
Blessings,Linda

Steve said...

First a disclaimer. I am an orthopedic hand surgeon trained to do traditional Dupuytren's surgery. I learned of the needle aponeurotomy (NA) technique several years ago, and have been doing it for over a year. I also recently attended the annual meeting of the ASSH (Hand surgeon society) in Chicago where a panel of experts discussed the future of Dupuytren treatment in the U.S. The lead investigator for the collagenase (injectable enzyme) presented preliminary data and was followed by a report on results for NA. The ultimate results were similar, but there were several significant differences. With NA, there were no (0) major complications and treatment was completed in one session using supplies available in any hand surgeon's office. Collagenase treatment required multiple visits (as you note) and several (3-4 of app 150 pts) suffered major complications including ruptured tendons and RSD ( a nerve injury). My conclusion from this presentation was that collagenase, at least in its present form, offers no advantages to NA. It will be expensive and much less convenient for the patient. The barriers to NA in the U.S. are interesting to speculate- nothing for a company to market and sell, less reimbursement for the doctor (compared with traditional surgery or collagenase), etc. I would urge anyone with Dupuytrens to do their homework. As a hand surgery professional, I cannot recommend collagenase.
Stephen Helgemo, MD

Anonymous said...

I work for one of the doctors who has been doing NA for about 5 years, he has been to all the 'sales' meetings the drug company has put on as well, he is well-informed about this and agrees with you, Steve, He will not be offering this drug as NA is so effective and less painful and less costly etc etc etc. He also will not be doing NA on patients who have had this drug injected previously, due to the unknown long term effects it may be having on tendons.

My doctor was quite insulted as well when Axillum, in a follow-up interview, inferred to him they would try to make him use the drug before NA could be attempted, "what would he think of that?" ha! you can imagines... Ah well, they have spent alot of money in development, and they mean to recoup it, patient welfare be damned.

David said...

Samantha, (and all)

First off, thank you so much for documenting your experience and for the opportunity to read and respond in your blog.

I am a 43yo guy living in NYC who discovered a nodule under my left pinkie about 15 years ago. Anyway..long story short, after the contracture got way past 90º, I did some much neglected, extensive research and decided to jet off to Paris to meet with Dr.Lermusiaux and get a needle apronevrotomy.
(NA was not practiced in the States at the time because it was not approved by the AMA. Not even sure if is now.)

Not to dismiss collagenase treatment...but I could not have been happier with my experience with NA. Less than one hour later I was sitting outside of a Paris bistro holding silverware in both of my hands, eating a wonderful lunch. My left pinkie was now at about 3º. Not entirely straight, but a remarkable difference.
Truly.

And when I read Dr. Steve's and Anon's post I just nodded with approval.
Surgery begets surgery-
Drugs beget drugs-
And the drug companies are not in the business of curing anyone. They are in the business of making money.

If you have DC, think Needle Ap.
They do it in the states now.

Thanks Samantha.

Samantha Hoffman said...

David,
Thanks for the personal account about NA. Interesting that my hand surgeon never told me about it, but then he IS a surgeon. I'm glad more and more information is coming out about it. A one hour procedure is about the best thing going. Well, really, the BEST thing going is sitting in a French bistro afterwards.
Regards,
Samantha

Snoring Beagle said...

Bless you Samantha.

I too have a curled up pinky on my left hand that came about rather rapidly in less than a year and a half from when I noticed it. While driving no less and placing my left hand on the steering wheel. One day I noticed it didn't feel right.

My right hand many years ago formed a small nodule on the palm. I had no idea what is was and it has never progressed further.

I live, work and play in northern lower Michigan. I also play Guitar and so far the pinky on my left hand has not been a problem, well maybe trying to stretch some.

Anyway, thank you for the time and effort you have put in making your trials and travails dealing with this affliction available on line and helping people like me decide what course of action to take.

Thank you,

on a side note is it possible to provide the name of the Doctor who moved to Detroit?

beaglesnoring@yahoo.com

Samantha Hoffman said...

Beaglesnoring,
The doctor who moved to Detroit is Dr. Clayton Peimer. I have no idea where he is now or if he's still involved.
Best wishes to you.
Samantha

the killer said...

DEAR SAMANTHA..I HAVE READ AND SEEN YOUR EXPERIANCE WITH THIS DREADFULL CURSE(DUPUTRENS).I HAD THE OP 4YEARS AGO..ON RIGHT HAND LITTLE FINGER....IT HAS COME BACK ON MY LEFT HAND..ANOTHER OP? I WILL PURSUE THIS INFORMATION YOU HAVE PROVIDED...THANK YOU VERY MUCH...JIMMY TAYLOR AUSTRALIA.

Samantha Hoffman said...

The Killer:
Check out the needle aponeruotomy as well. I don't think the procedure I had is on the market yet. Best of luck to you.
Samantha

Anonymous said...

Wonderful job on you blog, Samantha. I had surgery on my left hand in Nov 2008 which was very successful and I was happy with the results. Next came the same problem in my right hand and I considered NA and injections and went with the injections as you did. I received the injections on 1-9-12 and they were very painful. On 1-10-12 I went for the manipulation and he didn't numb it like he said he would, instead he started straightening the finger. I fully agree with you that it was the worst pain I had ever experienced. I am 70 and I felt like such a wuss. I also had a skin rupture and that is probably the worst thing to come out of this procedure. It left a huge cavity below my little finger which is beginning to heal now. The doctor also recommended therapy for a couple of weeks so the jury is still out on the final results of this ordeal. I must say at this time I am pretty satisfied with the procedure. Thanks for your videos and blog.

Anonymous said...

yikes!! I am a surgical RN and gore doesn't bother me until it's my own. I am considering this since the recovery time for surgery is 6 weeks or more including therapy post op. I don't have that much time accumulated so the inj. seemed a viable alternative. Hmmm, now I'm not so sure. I'm afraid I'd need some anesthesia even a light MAC--Lucky me, I have DC bilaterally! monitored anesthesia care.
Thank you for posting your experience with this.

Samantha Hoffman said...

Anonymous, since it's been FDA approved they do it with anesthetic so not to worry. Best of luck.

Dennis Halloran said...

I had normal surgery in 2007 on my right hand and it was very successful but a painful and long therapy afterwards. I was looking for NA for my left hand and could not get a referral out of system for it via medicare. I got the enzyme injection the other day and they manipulated a couple of painful pops to open up enough so that I can maybe do surgery now. I still lean towards NA and i may just pay out of my own pocket for it.

the killer said...

JAMES TAYLOR(ozzie).....ihad surgery on my right hand(little finger)for dupuytrens..6/7 years ago..the op was good and the little finger straightened out.In the year 2010 i had surgery on my left hand(finger joining little finger)..this was more painfull and took a long time to heal..however.the op finger never straightened out...bad luck! i was a piano player

mike said...

I visited with Clayton Peimer also but did not meet the requirements to be part of the study.I waited years to have the fda approve the treatment and find a local doctor here in southern michigan only to have to fight with my insurance to get them to pay.Had my first injection in february and the second in march. Finger is almost straight now so it was worth the wait.

Anonymous said...

Thank you all. I am a 70 year woman with Dupytrens in both hands and feet but mostly I'm confused. I rread that Xiaflex is no longer manufactured in Germany, hand surgeon I consulted said drug was "dangerous". My father had repeated surgeries and I remember the recurrence after each one.Is NA for moderate stage only and is it covered by Medicare or private insurance? Wondering

Leslie said...

Join us on the Dupuytrens Disease Support Group - nearly 900 patients worldwide discuss the disease, latest treatment options and we are joined by 10 world class physicians treating the diseases who regularly host free Q&A on our forum: https://www.facebook.com/groups/879351412113444/