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My Xiaflex Journal
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01/20/2011 14:36
ellenpao 
01/20/2011 14:36
ellenpao 
My Xiaflex Journal

Background - 4 NAs on middle RT finger, PIP very involved, thick cord at base of finger, finger contracted 80 degrees. Xiaflex with Dr. Pess in Eatontown, NJ

Day 1 -The injections! Doctor Pess numbs palm/finger, and administers 3 Xiaflex injections (I think it was 3, I wasn't looking :). No pain with injections. Hand is splinted and wrapped in ace bandage. Instructions are to keep it wrapped and elevated until the appointment the next day. That night was OK - no pain or discomfort.
Day 2 - The manipulation! Doctor Pess unwraps the ace bandage in preparation of giving wrist block for manipulation. Egads - the largest blood blister I have ever seen is at the site of the injections! Not painful though - just unsightly. Wrist block not enough to mask pain, so more injections in palm to numb it. That does the trick and the manipulation commences. Lots of pulling, pressing - and voila - a VERY loud, satisfying snap of the cord! Seroiusly, that is the best sound - it meant the injections did the trick! Blood blister still an issue - and it is bleeding quite a bit. Hand is wrapped and splinted, I'm given pain meds and sent home with a follow-up appointment in 4 weeks. Finger at about 10 degrees of contracture! YAY.
Day 3 - Home, hand VERY swollen, black and blues on back of hand, upper arm and armpit. Pain in lymph node in armpit. I haven't used any pain meds, though. Iced back of hand all day, but swelling not improving. Blood blister still very large and bleeding. Not wearing splint during the day - only at night.
Day 4 - Home, same status as day 3. Day of icing. I do notice that when I put the splint on at night that the finger seems to have gone back to a more-bent state, and that puting on the splint causes some discomfort. Still don't need pain meds though.
Day 5 - Home, same status as days 3 and 4. A day of icing - maybe the swelling has gone down just a little. Bruising is impressive! More black and blues appear on my upper/inner arm, and the armpit is very tender.
Day 6 - Home - swelling is going down - still icing all day. Have finally been able to use thumb and pointer finger on the hand! Blood blister still oozing, and same size (huge). feel like I turned a corner though - swelling much better.
Day 7 - Back to work! Not driving though. Swelling is much better, bruising turning impressive colors! The blood blister at the injection site remains the major issue. Finger wrapped in gauze - not splinting at work. Apparently though, I did too much during the day (typing, etc). When I splinted at dinner, the pain was the most I've had. I guess the finger got used to being out and about , and it wasn't happy! Contracture seems to be at about 20 degrees. Wore the splint the remainder of the night, and pain subsided as finger went back to about 10 degrees.
Day 8 - At work, Swelling way down, but blood blister is still the same size. Oozing. Not painful though. Trying to be better today and splinting off and on.

More later....hope this helps people to understand what to expect,

01/20/2011 16:16
tam1 
01/20/2011 16:16
tam1 
Re: My Xiaflex Journal

Thanks so much for sharing your day-by-day experiences with the Xiaflex treatment. Does anyone know why the Xiaflex injections sometimes cause swelling in the armpits or how long it can take for this side effect to disappear?

01/22/2011 04:58
dCinNYC

not registered

01/22/2011 04:58
dCinNYC

not registered

Re: My Xiaflex Journal

Does anyone know why the Xiaflex injections sometimes cause swelling in the armpits or how long it can take for this side effect to disappear?

The pain in my upper arm (which felt like a contusion) lasted a couple of weeks. I experienced faint bruising but no swelling. I used ultrasound twice daily and stretched and flexed the arm to encourage the healing and gradually any discomfort (especially noticeable when extending the arm over my head) abated.

01/22/2011 11:30
ellenpao 
01/22/2011 11:30
ellenpao 
Re: My Xiaflex Journal - update

Day 9 - At work, splinting off and on. The blood blister seems to be calming down, and the swelling is much better. Bruising is also going away, and upper arm and armpit much better. Using both hands to type.
Day 10 - Feel like I have turned a corner. Much more motion in hand, blister better - although still oozing and requires bandaging. I do notice that my finger is very sore/achy when I wake up in the morning - it seems like it has really been straining against the splint all night. It is definitely straighter in the morning than it is when I put the splint on before bed. Before bed/splinting, I would say the contracture is about 20 percent - then 10 percent when I wake up. it sure beats the 85 percent that I started with!

Overall, very happy with the results so far, seems like splinting is the key. The procedure was more involved than I had anticipated, and I had to stay home from work longer than I had planned. I'll report further down the line when I see longer term results.

Go for it!

01/22/2011 18:23
marigail 
01/22/2011 18:23
marigail 
Re: My Xiaflex Journal

I am scheduled for the injection on Feb. 1 and the stretching the following day. This will be the first or second time my doctor has done this---the office was just approved to offer the injection. I have read your journal and everything else that I can find on this. I'm a bit apprehensive---it does sound like a much bigger deal than my doctor has said. Although both hands are affected, the one I'm receiving the shot in is the pinkie finger on my left hand, which is VERY contracted---very close to 90 degrees. If you have any words of wisdom or know of anyplace else I can get some information, I'd be very appreciative.

01/23/2011 11:27
ellenpao 
01/23/2011 11:27
ellenpao 
Re: My Xiaflex Journal

Marigail - there are some videos on You Tube that you may want to watch. Just put Xiaflex in the search box. The good news is that there wasn't any pain at all during the injections and the manipulation - so go for it! The results are worth it.

I think that everyone's experience is different with this disease. You may have an easier time of it than I did. I wrote the journal so that at least there would be some info for people. In my case, it was really the blood blister that was/is the issue. You may not even get that complication.

Good luck, and keep us all posted on your progress.

01/23/2011 12:49
marigail 
01/23/2011 12:49
marigail 
Re: My Xiaflex Journal

Thank you so very much for pointing me towards e-tube to actually be able to watch and listen to commentaries about the procedure. I think it is a bit more involved than I had thought it might be, but from what you are saying and from what I am seeing, there is a good chance that this might work. I am certain some anxiety before something like this is not unusual, but it sure will be nice to have better use of my hand again. I certainly will keep you updated---please do the same!!

02/07/2011 16:43
dale robert

not registered

02/07/2011 16:43
dale robert

not registered

Re: My Xiaflex Journal

I am about to make an appointment for the Xiaflex Rx. My problem is, beside having Dupuytren's (Viking's Disease), I also have Raynound's syndrome. The ice treatment is especially disconcerting. The last thing I will do is apply an ice pack. Any feed back?

02/07/2011 16:52
marigail 
02/07/2011 16:52
marigail 
Re: My Xiaflex Journal

I hope I'm not sending this twice---computer is being quirky. Anyways---I have my shot tomorrow, Dale, so I will let you know what the doc says about ice. I do not, however, have the complications you do.

02/07/2011 17:04
dianataylor 
02/07/2011 17:04
dianataylor 
Re: My Xiaflex Journal

I have had dupuytrens for years and started the xiaflex treatment in November. I have it in my left ring finger & left thumb, and being untraditional, I also have it in my right index finger & thumb. The injection in my left ring finger has gone remarkablly well and it is straight for the most part. The left thumb has been injected twice now with little movement. I am having my right index finger(45 degree bend) done next week if the snow melts.

Has anyone else had their thumb done? I know it is rare & there is little guidance to "unbend it. Just need to know if it will ever work?

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