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My xiaflex experience
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07/23/2010 03:03
flojo 
07/23/2010 03:03
flojo 
Re: My xiaflex experience

My experience with the anesthetic and NA by Dr. Denkler was that the numbing was not so deep that I could not feel it getting close to the nerve. I was informed to that I might feel some sensations/pain and to tell him as he might be getting close to a nerve. I did feel "something" and told him which let him know that he was close to the nerve. I did not feel anything when the cords snapped, but I did hear them.
I think Dr. Eaton, from what I have heard, is an excellent choice for NA. I also think that Dr. Denkler is. There are others that are highly rated by people on this website. Thankfully, there are more and more doctors doing NA and are highly regarded by their patients.

09/16/2010 23:11
dave t

not registered

09/16/2010 23:11
dave t

not registered

Re: My xiaflex experience

I had my second xiaflex injection two days ago and manipulation today of a -45 degree contraction. Now my finger is at zero degree contracted and can hyper-extend.

Some discomfort with injections, some discomfort with anesthetic before manipulaton, very little pain and no swelling post manipulation. and I am typing this using the manipulated hand.

Of course, the choice to use any treatement regimen is a very personsal decison. Having previously had NA, I've got to say that xiaflex is less invasive, causes less residual pain and swelling than NA and is-for me-a quite remarkable tratment option.

09/21/2010 18:23
GMichael

not registered

09/21/2010 18:23
GMichael

not registered

Re: My xiaflex experience

I just had a Xiaflex procedure last week. I had a slow-moving case of Dupuytren's that affected only the PIP of my left ring finger. The contracture had been developing over the past 5 years or so, and had pulled my finger down to about a 45%-from-straight angle. I had seen three hand surgeons over several years, each of whom told me that my only real choice was traditional surgery. NA was not an option; the cord was in an unusual place (off center, toward the side of the finger) and so was too close to the nerve for NA. But once Xiaflex got FDA approval, I went to see a hand surgeon who was also qualified to do the collagenase injections. Given my unusual case, he told me that if it were his finger, he'd probably have a slight preference for traditional surgery, but he thought I was a good candidate for Xiaflex and was willing to do it. He would just have to be very careful about avoiding nerves and ligaments with the injections.

Well, the long and the short of it is that I had it done and it looks like a complete success. After a couple of weeks waiting for the Xiaflex to be delivered, I went in last Thursday to have the doctor do the injection into three parts of the thickened cord. The injection was painless, though there was some tenderness and substantial swelling in the hand by evening (plus a little pain and swelling in the armpit, which is apparently a common side effect). The next morning I went in, he numbed my hand, and did the manipulation (no audible snap, but he says he felt it give at a certain point). That part was also painless. I've had to wear a splint (45 minutes on, 15 minutes off) for a few days, but after seeing the physical therapist yesterday, he says I can cut down to wearing it two hours per day (but all night for the next four months). Now, four days later, the swelling and pain are all but gone, I can straighten the finger completely, and the big lump below the PIP joint is gone. No physical therapy necessary. Considering that surgery would have involved 2 months of twice-weekly physical therapy, I'd say this qualifies as pretty miraculous. The physical therapist was flabbergasted. (I was his first post-Xiaflex patient)

Of course, long-term problems could develop, but as of now, I'm a pretty avid advocate of the collagenase injection.

09/21/2010 21:28
LubaM. 
09/21/2010 21:28
LubaM. 
Re: My xiaflex experience

@GMichael:
Now, four days later, the swelling and pain are all but gone, I can straighten the finger completely, and the big lump below the PIP joint is gone. No physical therapy necessary. Considering that surgery would have involved 2 months of twice-weekly physical therapy, I'd say this qualifies as pretty miraculous. The physical therapist was flabbergasted. (I was his first post-Xiaflex patient)

Of course, long-term problems could develop, but as of now, I'm a pretty avid advocate of the collagenase injection.
Thats wonderful ! glad your immediate results are so positive.

It would be great if you could post on this forum at 6 and 12 months from now to update us on how its going.

09/21/2010 21:50
GMichael

not registered

09/21/2010 21:50
GMichael

not registered

Re: My xiaflex experience

I'll try to remember to post progress reports. My case of Dupuytren's seems less aggressive than some cases I've read about here, so recurrence, if it happens, might be slower, too. Or so I'm hoping.

By the way, my insurance carrier is Blue Cross Blue Shield (CareFirst), and as far as I know, they're covering the whole thing. The specialty pharmacy that handled the Xiaflex shipment called me several times to tell me that my co-pay would be zero, but I'm waiting to see if BCBS has any unpleasant surprises in store for me...

09/21/2010 22:41
jimh 
09/21/2010 22:41
jimh 
Re: My xiaflex experience

This is sounding better all the time.

My real reservation about Xiaflex has been that the MD would just do an injection, and it would either work, or it wouldn't; and if the injection wasn't sufficient to let the cord be snapped, well that's just too bad. Whereas an MD doing NA will try to persist, and will keep cutting at the cord, until he succeeds.

09/21/2010 23:27
moondanc 
09/21/2010 23:27
moondanc 
Re: My xiaflex experience

jimh:
This is sounding better all the time.

My real reservation about Xiaflex has been that the MD would just do an injection, and it would either work, or it wouldn't; and if the injection wasn't sufficient to let the cord be snapped, well that's just too bad. Whereas an MD doing NA will try to persist, and will keep cutting at the cord, until he succeeds.

Have you read any reports of Xiaflex not working--I don't think there have been that many reports of it but i could be wrong and I guess it could depend on something unusual in a person's body chemistry. However, if injected properly and in the correct place, it's hard for me to imagine the cord would not "dissolve"-- AFAIK the injection amounts are fairly standard.

That said, and not to rain on anyone's parade, in the Xiaflex study my PIP joint easily straightened--it just didn't stay straight past 14-16 months. PIP joints tend to be the easiest for Xiaflex (and NA if I'm not mistaken). If one can get it covered by insurance I'd probably go ahead but if I was paying out of pocket, I'd wait for more reports on how long it lasts and absolutely make sure there aren't adverse effects such as accelerating the disease.

Diane

09/22/2010 00:10
GMichael

not registered

09/22/2010 00:10
GMichael

not registered

Re: My xiaflex experience

Moondanc, I don't know anything about the statistics, but is speed of recurrence really associated with the type of treatment received? NA, Xiaflex, and traditional surgery all treat the symptoms of Dupuytren's, but I would think that the speed of recurrence would have more to do with the nature of the underlying disease, rather than with the chosen type of treatment of the disease's manifestation. In other words, do we know, from the research, that the speed of recurrence in your PIP would be greater or lesser after Xiaflex or NA or surgery, or would the speed of recurrence be more or less the same no matter which treatment you received, based instead on the aggressiveness of your underlying disease? I'm asking because I honestly don't know.

09/22/2010 00:15
LubaM. 
09/22/2010 00:15
LubaM. 
Re: My xiaflex experience

moondanc:

Have you read any reports of Xiaflex not working--I don't think there have been that many reports of it but i could be wrong and I guess it could depend on something unusual in a person's body chemistry. However, if injected properly and in the correct place, it's hard for me to imagine the cord would not "dissolve"-- AFAIK the injection amounts are fairly standard.

That said, and not to rain on anyone's parade, in the Xiaflex study my PIP joint easily straightened--it just didn't stay straight past 14-16 months. PIP joints tend to be the easiest for Xiaflex (and NA if I'm not mistaken). If one can get it covered by insurance I'd probably go ahead but if I was paying out of pocket, I'd wait for more reports on how long it lasts and absolutely make sure there aren't adverse effects such as accelerating the disease.

Diane
Re: PIP recurrence ..... Yours didn't last past 14-16 months with Xiaflex....mine didn't last past 6 months (and I had NA twice on same finger ... I believe that the PIP is just a very stubborn joint to repair (at least in my case)....and yet some people have written that theirs lasted for a long time. I also think that its so different from person to person.... weird disease !

Edited 09/22/10 03:16

09/22/2010 03:15
moondanc 
09/22/2010 03:15
moondanc 
Re: My xiaflex experience

@GMichael:
Moondanc, I don't know anything about the statistics, but is speed of recurrence really associated with the type of treatment received? NA, Xiaflex, and traditional surgery all treat the symptoms of Dupuytren's, but I would think that the speed of recurrence would have more to do with the nature of the underlying disease, rather than with the chosen type of treatment of the disease's manifestation. In other words, do we know, from the research, that the speed of recurrence in your PIP would be greater or lesser after Xiaflex or NA or surgery, or would the speed of recurrence be more or less the same no matter which treatment you received, based instead on the aggressiveness of your underlying disease? I'm asking because I honestly don't know.

I misspoke about the joints. I always get confused. It's the MCP joint (the first joint) and not the PIP, the second joint, which is the easiest.

It's a conundrum. Originally traditional open hand surgeons said NA wasn't valuable because it didn't last as long as OS. They also claimed that since OS "removed" some of the affected tissue it took longer to reconnect or progress. Then when Xiaflex came along, they started talking about how it was better than OS because Xiaflex lasted longer. However, I don't think we have any real evidence of this since the FDA studies to bring Xiaflex to market were limited and had very few patients. Also, followup studies have been really limited as to how long Xiaflex actually lasts. You ask a very good question in regards to the aggressiveness of the disease. Also "do we know from the research"-- unfortunately, AFAIK there haven't been all that many research studies on aggressiveness because for so long OS was the only alternative and because research studies are so costly, docs performing NA have not been able to do double blind studies.

We're all different in regards to how DD affects us. In my case, the first signs of DD were almost 20 years ago in just one hand, one finger MCP joint. It progressed very, very slowly for 15 years and then it started to move faster. I had NA that lasted for a couple years-- still only one hand, one finger affected; then Xiaflex on one finger. After Xiaflex to release the MCP joint, the disease started progressing with a vengeance-- it moved to the PIP joint of that finger, then two other fingers of that hand. It also started progressing very rapidly on 3 fingers of my left hand. I'm not even sure if there have been any studies as to how NA might affect the progression of the disease.


Please forgive any typos-- I can't find the spell check tonight!

Diane

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