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after xiaflex
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10/06/11 17:15
alverlak 
10/06/11 17:15
alverlak 
after xiaflex

I had the Xiaflex injection 8 weeks ago. It straightened my ring finger very well. However after 8 weeks, I cannot make a fist as the ring finger prohibits this. After soaking in warm water, I can use my left hand to get the fingers to meet the heel of my palm, but when I release the fingers they move away from the palm heel. If I try to pull the fingers back--ouch! and the finger(s) starts shaking. Therapy isn't helping either. The hand Dr. asked me to wiggle my finger, and I can, so he ruled out tendon damage. He won't take a MRI--says some people take longer-but I've seen no progress since week one. Anybody else experience this? Might I have tendon or ligament damage, OR????

10/06/11 19:32
DianeS 
10/06/11 19:32
DianeS 
Re: after xiaflex

HI, I had xiaflex about 6 months ago. Had it more to arrest progress of the disease and disolve nodules rather than to fix a contracture. I had kind of a rough time - it affected me pretty strongly. Had bruising and discomfort for a long time. I still have a little in my one slightly bent finger. And I tore some tissue about 10 days out in my right hand. Not tendon and Dr. not sure what it was but I suspect a tear in fascia. I grabbed something heavy and shouldn't have. That has taken a very very long time to heal and I couldn't even begin to make a fist for a long time. I finally got had therapy after 4 months as it just wasn't healing fast enough for me and that has helped. While I can still feel some tightness in there I can almost make a normal fist. Unfortunately I got a new little cord started which I think might be due to this trauma. So I made the decision to get radiation and have had the first course of treatment just recently. It went fine no ill effects but it takes some weeks to see any results and I will have another round in a couple of months.

So while I would not tell anyone to not have xiaflex if recommended, just be really careful with your hands afterward and be prepared for the after effects. I bet your hand will heal up and improve with therapy but its just going to take longer - like six months. My hand therapist does an ultrasound thing to soften the internal scar tissue as well as massage and such. it has helped. hope you can get some relief. DianeS

10/11/11 18:35
bstenman 
10/11/11 18:35
bstenman 
Re: after xiaflex

I had a hand treated with Xiaflex in March of this year. It took more than a month to regain full use of the hand with all the swelling. The treatment was not completely ineffective but my contracture has returned by about 50% in less than 6 months. The NA procedure was a lot cheaper, recovery time was two days, and the treatment lasted four times as long.

Next time I will go with the NA again and not Xiaflex. At the current rate of contracture the NA will be needed by early 2013 if not sooner. Overall the Xiaflex was a big disappointment from start to finish in every regard.

Part of the problem is the restriction to a single dose by my insurance company, Empire Blue Cross. I would have been way ahead financially and medically to have suspended my insurance for a year and paid for the Xiaflex out of pocket and gotten two doses of the drug injected into my hand.

I expect that others are also getting half a treatment due to the restrictions placed by the health care insurance company executives. The FDA places no such restrictions, it is purely a profit maximizing approach taken by the executives at companies like Blue Cross in the United States.

11/02/11 16:16
ellenpao 
11/02/11 16:16
ellenpao 
Re: after xiaflex

Couldn't agree more! I'm in the same boat.

NA and splinting for me!

11/11/11 20:59
Russ 
11/11/11 20:59
Russ 
Re: after xiaflex

I had Xiaflex for the first time in April 2011 and it was challenging for about a month. Since then however I have had more mobility in my left thumb- index finger than I got from surgery 12 years ago and then NA 5 years ago. I have been pleased with the results so I have gotten a second injection in my right pinky about a month ago. Once again it has been challenging but my finger is straighter than it was after NA and as the swelling goes down I have already gotten as much flexibility and I am expecting more in due time. It has certainly slowed me down for a while now but I am planning to go ahead and do my other pinky in a few weeks. The Medicine is harsh but the results are amazing. Dr. Denkler has a lot of experience with this and does several small injections with the single dose of Xiaflex to "etch down " the contractures and nodules. Then the manipulation breaks the bonds and over time they dissolve as the swelling goes down. So far so good. There is not a perfect cure for this disease so I will keep trying what is available and after waiting 10 years to get ahold of this enzyme I feel fortunate to have the opportunity to try it.

11/22/11 16:25
mahadevi 
11/22/11 16:25
mahadevi 
Re: after xiaflex

I am interested in hearing from others who have had adverse effects from a Xiaflex injection. It has been a year since I had an injection to release a contraction of the mp joint in my right ring finger. My hand has been in far worse condition since the day of the procedure. It was effective in releasing the contraction in the mp joint, but the side effects and collateral damage have been devastating both physically and financially.

Within days, I had new contractions in the dip and pip joints in both the ring finger and pinky, and a new lump formed next to the one injected. Within two weeks, the contractions in the ring finger and pinky were so significant that I could not fit into the splint made the day after the manipulation. A few weeks later, another large lump formed in the thumb web. The injection clearly exacerbated the disease.

All of the dip and pip joints in all four long fingers remain persistently swollen and stiff and all fingers have visible cords that were not there prior to the injection. I am not able to make a fist and have little strength in my hand. While overall swelling has reduced since the injection, it has never entirely resolved and the skin on my hand is taught. I experienced extreme never pain over the back of my hand for a few months, and the swollen joints leave me in a constant level of discomfort.

The surgeon's observation was that the disease had spread. Given that enlightened response, I saw another surgeon that participated in the Stanford trials who described my condition as a dupuytrens flare. I still don't have an understanding of my response. I've had an MRI to confirm that there was no ligament damage and a neurologist ruled out complex regional pain syndrome.

I have been in physical therapy for the last year with no real improvement. Among multiple modalities, my daily therapy includes a custom brace to push the fingers into a bent position for 30 minute stints as often as tolerated.

Has anyone else had a similar experience? If so, was there any improvement over time? After a year, I'm beginning to lose hope of regaining full use of my hand. I understand that this treatment has helped many avoid surgery, but it's my opinion that it has risks that extend beyond the informed consent.

12/12/11 04:22
moondanc 
12/12/11 04:22
moondanc 
Re: after xiaflex

mahadevi:
I am interested in hearing from others who have had adverse effects from a Xiaflex injection. It has been a year since I had an injection to release a contraction of the mp joint in my right ring finger. My hand has been in far worse condition since the day of the procedure. It was effective in releasing the contraction in the mp joint, but the side effects and collateral damage have been devastating both physically and financially.

Within days, I had new contractions in the dip and pip joints in both the ring finger and pinky, and a new lump formed next to the one injected. ... If so, was there any improvement over time? After a year, I'm beginning to lose hope of regaining full use of my hand. I understand that this treatment has helped many avoid surgery, but it's my opinion that it has risks that extend beyond the informed consent.

I had the exact same experience. I had NA on ring finger of RH. Within months it contracted again and had spread to my pinkie finger--again, my experience is much the same as yours-- with a contraction that proceeded to 135 degrees. DD also started up with a vengenance on my left hand. I totally agree with you about the risks and since I was in the FDA trials and have to return once a year for followup I've met three other patients who have had the same experience -- their disease got worse, spread and quite quickly. Dupuytren's flare my *&^$--hope the surgeon you saw at Stanford didn't have a financial connection to Xiaflex--many of the folks who conducted the FDA trials do.

Moondanc

Edited 12/12/11 04:25

12/12/11 21:30
moondanc 
12/12/11 21:30
moondanc 
Xiaflex for docs and Xiaflex long term results

I have heard from other members in the FDA trials group and elsewhere that Xiaflex sales aren't going that well, perhaps because of insurance company problems. One of the things they are doing is offering free Xiaflex so certain doctors--I'm not sure if it's just one dose or not. I'd sure like to see some of the study results now that it's FOUR years after the trials.

Moondanc

12/16/11 04:39
moondanc 
12/16/11 04:39
moondanc 
Re: after xiaflex

I'm sure many forum members think I'm rabid in my anti-Xiaflex attitude but I had Dupuytren's in one finger-- my LH pinkie- for more than 15 years before it progressed enough to require NA. I had NA and after several years it did come back enough in that finger to qualify me for the FDA Xiaflex trials--but that was the only finger that qualified or had DD.

In less than two years after my Xiaflex injection I had Dupuytren's in 8 fingers!--ALL FOUR FINGERS OF EACH HAND. Subsequent to my Xiaflex injection I've had radition therapy on both hands (immediately after NA); I've required three NA treatments on the Xiaflex injected finger--the first NA procedure after the Xiaflex injection needed to be redone in only THREE months. I've also required NA two more times --since my Xiaflex injections-- on three more of my fingers.

The continuing followup with Xiaflex trial patients includes blood testing to monitor antibodies. From a Xiaflex publication: "Since the protein components in XIAFLEX (AUX-I and AUX-II) have some sequence homology with human matrix metalloproteinases(MMPs), antiproduct antibodies could theoretically interfere with human MMPs."

Google-- Matrix metalloproteinases (MMPs)

http://en.wikipedia.org/wiki/Matrix_metalloproteinase
"The MMPs play an important role in tissue remodeling associated with various physiological and pathological processes such as morphogenesis, angiogenesis, tissue repair, cirrhosis, arthritis, and metastasis. MMP-2 and MMP-9 are thought to be important in metastasis. MMP-1 is thought to be important in rheumatoid and osteo-arthritis. Recent data suggests active role of MMPs in the pathogenesis of Aortic Aneurysm. Excess MMPs degrade the structural proteins of the aortic wall."

Metastasis, or metastatic disease (sometimes abbreviated mets), is the spread of a disease from one organ or part to another non-adjacent organ or part

I'm not really trying to do layman pseudo science-- I'm totally unqualified. What I'm suggesting is that we really don't know a lot about the long term effects of Xiaflex. Keep in mind that CORD 1, the 3rd phase FDA trial that resulted in approval, had only 308 patients!
http://www.ajpblive.com/media/pdf/AJMC_C...ideAlongFnl.pdf

Thank goodness I don't have Peyronie's disease.

Your FDA guinea pig,
Moondanc

12/16/11 05:01
hammer 
12/16/11 05:01
hammer 
Re: after xiaflex

Im in Oklahoma right now to get my 30 day follow up at the multiple cord study,They had 60 slots in the United States and 60 Down Under.They were at 54 with the Indianapolis clinic just started enrolling I drive 1,500 miles round trip.Indianapolis is closer but they dont have Dr Frazier who Ive been lookin for for 25 years.Hand surgeons,Plastic surgeons Ive seen them all.This guy is not only passionate about this drug he is passionate about DD.It shows with all the people that work with him and the patients of his Ive met.He is on another level than any one else that Ive been treated by.Ill keep ya posted.Dave

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fingers   treatment   metalloproteinase   contractions   understanding   disappointment   manipulation   disease   improvement   metalloproteinases   osteo-arthritis   financially   finger--again   injection   Xiaflex--many   experience   contraction   xiaflex   theoretically   restrictions