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My Xiaflex Experience (Long Write Up)
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04/03/15 11:01
Sherise 
04/03/15 11:01
Sherise 
Re: My Xiaflex Experience (Long Write Up)

Hi David,

My finger is in and out of the curl all day and sort of straight all day. I often put back on my hand splint. The dr. said I must wear it every night for at least a year after the XIAFLEX injections.

I had surgery on the pinky and it flared all my fingers & the DC has curled all my fingers. I also have palm Psoraisis which made the scar from surgery much thicker. There is a study connecting the two diseases together. See study on DC and palm Psoraisis.

The XIAFLEX enzyme did eliminate all the scar tissue from the surgery. My finger is still painful and swollen and bruised. The 2nd joint is disfigured from the bent position for three years. My surgeon at the time left no other options for treatment and I found other resources on my own.

I tried surgery, NA. and XIAFLEX. Each time it made my hand flare or worse in some way. There are many other treatments I have read about. It's to risky for me. I am at the level 4 with this disease hoping just to be able to wear gloves.

I have heard of the Keobner Phenomenon. This is where any action taken for repair causes the condition to worsen. It would be the surgery, or NA and XIAFLEX in my case. I wonder what low level radiation or laser treatment would cause. I am very apprehensive thru my experiences.

Originally I had one pinky finger slightly bent. After surgery all fingers flared from surgery & became curved and the pinky curled closed . Now my hand looks like a claw and have limited use.

Every time I try to fix this DC every attempt has made it worse.

So for now I think I will take a break and wait for my pinky to settle down from the XIAFLEX injections. All that money for treatment and it's such a fickle disease. I hope you find something to help you. I totally get your frustration and dealing with DC is always so unpredictable.

Be sure to wear a splint every night! Take care! Hope to hear from you and it's better news.

04/18/15 10:08
MelioraDockery 
04/18/15 10:08
MelioraDockery 
Re: My Xiaflex Experience (Long Write Up)

Thanks so much for all this info. I'm going for a Xiaflex treatment in about 3 weeks (middle joint of right hand pinky is turning in) and I have to admit to being a little scared. I'm not even convinced it's the right way to go. Nodules in my palm are very bad but strangely it's only affecting my pinky which is contracted to about 45 degrees. All other fingers are straight. Your experience, even though depressing, is very helpful. Thanks again.
Mel

04/18/15 13:05
Cherise 
04/18/15 13:05
Cherise 

Re: My Xiaflex Experience (Long Write Up)

Good Luck Malora,

Everyone reacts differently with DC to treatments.Please click on the above button for all, treatments on DC.

Also go to the Xiaflex web site for all ifo on the SIDE EFFECTS . This was my only chance to open the finger as needle A did not work,in the later stages I was in stage 4,"and surgery made it worse.

Ask UR doctor about any allergies you have which usually connects to your current ones.

It helped open my pinky. A splint is worn nightly for a year in my case.

I wish you the best success.mplease,keep me posted on your injections . The side effects are all on the Xiaflex web site.
I had s few.
Xiaflex is a enzyme which will eat thru the thick collagen build up in areas for the finger to be gently maneuvered to a open position. It is also in a clinical study for removing thick scares.,it also removed the scar fron surgery,which helped in the appearance and function of the finger.

This is a decision only U can a make and the more info you are armed with the less the fear.there is a pic of my hand a few days after injection. It does cause the hand to swell,for a few weeks

Please keep my posted on your progress.
Cherise

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04/18/15 13:46
MelioraDockery 
04/18/15 13:46
MelioraDockery 
Re: My Xiaflex Experience (Long Write Up)

Thank you for your reply. I have a call in to the doctor and he will call me on Tuesday. One concern I have is the thick cords and nodules on my palm. I'm afraid the injection in my pinky (to break the cord there) will negatively affect the nodules in the palm because of the swelling.
It's such a help to have this forum, in addition of course to the doctor, to talk to people who have actually experienced Xiaflex. My doctor is experienced, patient and proficient. He has advised of potential hazards (ruptured tendon, nerve damage etc.) I've gone to the site and seen the numerous listings of side affects, such as allergy to collegen and I have no idea how one knows before having the injection.

04/28/15 19:42
klm2050 
04/28/15 19:42
klm2050 
Re: My Xiaflex Experience (Long Write Up)

Xiaflex ... my experience was VERY negative. I've had open surgery once (horrible and results lasted less than a year), 15 or 16 needle aponeurotomies (I miss you Charlie Eaton, but Dr. Keith Denkler in California is also terrific at this) and 1 treatment of Xiaflex - very expensive, very painful and within 8 months I have grown the biggest, sorest, meanest looking cord EVER in the area where the Xiaflex was injected. I've been dealing with very aggressive DC in both hands for 16 years, so my case is NOT typical. Bottom line, I'd have the needle treatment as often as necessary before resorting to surgery or Xiaflex. Kristen

04/29/15 04:07
Cherise 
04/29/15 04:07
Cherise 

Re: My Xiaflex Experience (Long Write Up)

MelioraDockery:
Thank you for your reply. I have a call in to the doctor and he will call me on Tuesday. One concern I have is the thick cords and nodules on my palm. I'm afraid the injection in my pinky (to break the cord there) will negatively affect the nodules in the palm because of the swelling.
It's such a help to have this forum, in addition of course to the doctor, to talk to people who have actually experienced Xiaflex. My doctor is experienced, patient and proficient. He has advised of potential hazards (ruptured tendon, nerve damage etc.) I've gone to the site and seen the numerous listings of side affects, such as allergy to collegen and I have no idea how one knows before having the injection.


Mal,

The injection site did cause my whole hand to swell. The nodgules in the palm area did respond and become larger.

After two weeks my pinky was manulipated to 80' from a 135' contracture. The scar tissue from the surgery a year before was also gone. This is do to the fact that Xiaflex is a enzyme which only works thru the collagen tissue as well as collagen is also made up of scar tissue. The scar tissue alone was thick and painful. It was a relief to have a smooth finger again.

It's been 2 months now since my Xiaflex injection. I am happy the finger is open easier to function. However the joints are deformed from 3 years of the contraction of 👨‍👩‍👧 135'. The surgeon that did the surgery walked out of the exam room literally stating well that all I can do for you and you had a flare from surgery that sometimes happens in DC which caused all 4 fingers to contract. Now it's more than one finger it all four from surgery which was to stop the contracture. Instead now all 4 fingers have a 70' contracture. So I was left on my own to figure this out.

When studing the bio drug Xiaflex, for me I decided it was my last option to open my pinky and thru all the pain and side effects and cortisone shots in the enlarged nodes from swelling it did calm them down to the origional size and Xiaflex did open my pinky. It's so much easier to do things and wear garden gloves, any gloves, shake hands...etc.

But I am stopping here. No more treatments as every treatment seemed to have the Keobner effect. ( flaring worse than before the damage form the DC originally. )

My pinky is still very painful to touch the joints and I am seeing a Dr. to help decide what's next to control he joint pain. Or just give it more time.

I am just glad thru all the three years of struggles my pinky has opened using Xiaflex plus removed all the thick scaring.
That in itself was a big hurdle.

I will try some alternative suggestions from members here and splints suggested on this forum.

I will ask my Dr. About steroid injection in the joint to calm the enlarged joint and let you know how works out tomorrow. I know the cortisone injections in the nodes help shrink those after the Xiaflex. I guess I was luck with that one!

04/29/15 04:28
Cherise 
04/29/15 04:28
Cherise 

Re: My Xiaflex Experience (Long Write Up)

klm2050:
Xiaflex ... my experience was VERY negative. I've had open surgery once (horrible and results lasted less than a year), 15 or 16 needle aponeurotomies (I miss you Charlie Eaton, but Dr. Keith Denkler in California is also terrific at this) and 1 treatment of Xiaflex - very expensive, very painful and within 8 months I have grown the biggest, sorest, meanest looking cord EVER in the area where the Xiaflex was injected. I've been dealing with very aggressive DC in both hands for 16 years, so my case is NOT typical. Bottom line, I'd have the needle treatment as often as necessary before resorting to surgery or Xiaflex. Kristen


Kim what happened with your Xiaflex injections? I too had the worse side effects from surgery. I have had nodes in my palm for 20 years and just left them alone. Until my pinky started to contract. The hand surgeon at the time encouraged me to do surgery and stop the contracture. That went very bad .

I noticed too that the cord in my pinky is defined more than before the Xiaflex and tight. Under my circumstances my pinky was at a 135' contracture for 3 years. This bio drug is a enzyme that only attacks the collagen that builds up and causes the contraction of the tendons. This is such a frustrating disease. i will always have to wea finger splints on 4 fingers every night, and mos of the day to keep the tendons stretched.

Again everyone reacts differently to treatments. One patients solution could be another's nightmare. There doesn't seem to be an absolutes in treatments. The many levels and stages of this disease is uncontrolled. I have read the levels of DC & protocols for all treatments. Yet none of the documented treatments have been my experience.

05/10/19 22:15
joycie 
05/10/19 22:15
joycie 
Re: My Xiaflex Experience (Long Write Up)

Hi- I was hoping someone can help me- I have to call my Dr. back. I got 4 injections on Monday-left hand ,ring finger has dupuytrens. I did not go back for the manipulation of the finger because I was in so much pain. Now I have no idea where I stand. Did anyone ever have an experience like this. It was so painful I just couldn't imagine the Dr. touching my finger again.

05/10/19 22:21
spanishbuddha 

Administrator

05/10/19 22:21
spanishbuddha 

Administrator

Re: My Xiaflex Experience (Long Write Up)

joycie:
Hi- I was hoping someone can help me- I have to call my Dr. back. I got 4 injections on Monday-left hand ,ring finger has dupuytrens. I did not go back for the manipulation of the finger because I was in so much pain. Now I have no idea where I stand. Did anyone ever have an experience like this. It was so painful I just couldn't imagine the Dr. touching my finger again.
Hi joycie , You should call your doctor. The hand is usually numbed with a block before the manipulation. There is still time. Sometimes the cords will release themselves, but best it’s done under supervision. The worst part is probably behind you now, but see your doctor and get the hand straightened.

05/10/19 23:51
joycie 
05/10/19 23:51
joycie 
Re: My Xiaflex Experience (Long Write Up)

hi- I will call the Dr. but I really can't have him touch my hand again...I don't believe the worst is behind me-the cord is thick and this is going to snap and hurt me--I just was wondering if anyone is doing what I did and not follow through. I honestly would have like to have the surgery--done and over. -They are sending me for PT and a brace. I place my hand in ice cold water and stretch it.

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surgery   treatment   Contracture   swelling   Xiaflex   treatments   “manipulation”   Injection   manipulation   didn’t   swollen   Experience   aponeurotomies   fingers   painful   protractor   Because   appointment   something   injections