| Lost password
365 users onlineYou are not loggend in.  Login
Advice on Xiaflex
 1 2 3 4 5 6
 1 2 3 4 5 6
06/14/2012 22:46
nriedell 
06/14/2012 22:46
nriedell 
Advice on Xiaflex

Hello,

I had surgery on Dups 3 yrs ago on my right hand (pinkie, middle knuckle). The Dups has grown back with a vengeance and the Dr wants me to consider Xiaflex (which he is licensed to do). He told me that Xiaflex works 70% percent of the time which means that it doesn't work 30% of the time.

The new growth has retracted my pinkie to 70% (before my surgery in '09, it was at 60%) and he said the Xiaflex (when it's successful) is good on the more aggressive cords.

So, my question: Is there anyone out there who had a Xiaflex injection and it did not work? What percent was your finger retraced? What other procedures did you try?

Also, I'd like to hear from those who were successful with the Xiaflex injection. How are you doing now? Did you have any side effects? Would you have it done again?

He also told me that Xiaflex is $3500!!! So, I'm going to call my insurance (Aetna - not so sure I'm glad I met ya ) and find out if 1) they cover Xiaflex at all and 2) how much?

Any advice would be most helpful.

Thanks!

06/14/2012 23:20
hammer 
06/14/2012 23:20
hammer 
Re: Advice on Xiaflex

Ive had 4 injections since november,Im in another multiple cord,multiple injection study coming up in August,If you have had a contraction for a long time your fingers will contract thru out the day.Then splint and stretch them straight again every day.This is not a pain free procedure,it hurts like crap.Also there is a boatload of swelling.Advantage is the down time,I was back to work in 2 days after the last injection,but I had no skin split that time.Im at 150% on my left ring finger but they want to see how it works on stage 4 dups.Have you checked on NA its another alternative to the knife.Na is arround 900 bucks give or take.Dave

Edited 06/15/12 02:22

06/14/2012 23:28
nriedell 
06/14/2012 23:28
nriedell 
Re: Advice on Xiaflex

Thanks for the advice, Dave. No, I didn't ask about NA. Dr told me 3 yrs ago that he wasn't too keen on it cuz it grows back. But I forgot to ask him about it today.

Your experience with Xiaflex sounds pretty good! I'm curious to see what others have to say.

Dr also told me that Dups doesn't qualify you for disability ins! Anyone know anything about that??

06/14/2012 23:37
hammer 
06/14/2012 23:37
hammer 
Re: Advice on Xiaflex

Dr probly didnt mention it would come back after surgery either,Always get a second or even 3rd opinion withh these guys,they r in it for the money.It comes back no matter which way you go.If you have an aggresive case,then go for most cost efficient.Ive had 4 surgerys in 6 years and the would still be cuttin me open if i would let them.good luck.Dave

Edited 06/15/12 02:38

06/15/2012 04:30
wach 

Administrator

06/15/2012 04:30
wach 

Administrator

Re: Advice on Xiaflex

There are no studies available that are directly comparing NA and Xiaflex but what is available seems to indicate that the recurrence after Xiaflex and after NA is about the same. In their NA study http://journals.lww.com/plasreconsurg/Ab...l_Trial.30.aspx the authors compare with surgery but in the discussion also with Xiaflex and find that with respect to recurrence the results of NA and Xiaflex are basically the same (unfortunately not mentioned in the abstract).

The recurrence after surgery takes longer, probably about twice as long, but the disease will come back, too.

Wolfgang

nriedell:
Thanks for the advice, Dave. No, I didn't ask about NA. Dr told me 3 yrs ago that he wasn't too keen on it cuz it grows back. But I forgot to ask him about it today.

Your experience with Xiaflex sounds pretty good! I'm curious to see what others have to say.

Dr also told me that Dups doesn't qualify you for disability ins! Anyone know anything about that??


Edited 06/15/12 07:31

06/15/2012 11:27
nriedell 
06/15/2012 11:27
nriedell 
Re: Advice on Xiaflex

Thanks Wolfgang. I had surgery 3 yrs ago (before Xiaflex was approved by the FDA). Dr told me that a 2nd surgery will only start to mess up the nerves, capillaries, and blood vessels, so he's not recommending it. The 2nd retraction took a couple of yrs after surgery. I'm a professional artist and need to have the use of my hands. I think I"ll look into Xiaflex. Thank you for the info.

06/16/2012 13:33
pia2some 
06/16/2012 13:33
pia2some 
Re: Advice on Xiaflex

I had my first Xiaflex injection in April. It was used on a cord on my right ring finger. So far, so good. My finger had a 40 degree contracture and now it is perfectly straight. My pinky and middle finger are also contracted so I do need more injections. My insurance is with Cigna and they covered the medicine at 100%! I was totally shocked. The doctor's bill ended up being about $750 due to my annual deductible and the co-pay. If I were to have more injections this year, the medicine would still be covered at 100% and the doctor's fee would be much less because my deductible is now met.

It did hurt. A lot. And like Dave said, there was as lot of swelling and I had bruising up to my armpit. It was bad for about two days. After that, it was sore and swollen for about another week, but nothing too terrible. I'm still wearing a splint at night.

06/16/2012 13:51
nriedell 
06/16/2012 13:51
nriedell 
Re: Advice on Xiaflex

Wow, that's very encouraging! It's a good possibility that Aetna will cover it after all. I haven't yet called them but I will. My pinkie on my left hand is curved at 45% - no worse than '09. Maybe Aetna will cover both. Thanks for the info!!

06/16/2012 14:12
pia2some 
06/16/2012 14:12
pia2some 
Re: Advice on Xiaflex

nriedell:
Wow, that's very encouraging! It's a good possibility that Aetna will cover it after all. I haven't yet called them but I will. My pinkie on my left hand is curved at 45% - no worse than '09. Maybe Aetna will cover both. Thanks for the info!!

I am still somewhat confused as to how Cigna processed the Xiaflex medication. It did not go through our pharmacy coverage, even though the doctor had to order it through Cigna's Specialty Pharmacy. It was paid under the medical coverage. But there was no co-pay (which we always have on medical and on pharmacy). I thought that I'd surely have a co-pay of some sort. I'm still shocked that any insurance would be willing to pay for a $3,465 vial of medication at 100%. But I didn't argue and was quite happy!

Hope you get some good news from Aetna.

~ dawn

06/16/2012 20:17
Tusk 
06/16/2012 20:17
Tusk 
Re: Advice on Xiaflex - Question for Wolfgang

Wolfgang, regarding surgery and recurrence, can the disease recur under a skin graft? Of course it might extend to a new location but I've read there are some who say it doesn't recur under a skin graft. There are unique surgical situations that call for a skin graft and several posters have mentioned they've had one or more. Just curious.

 1 2 3 4 5 6
 1 2 3 4 5 6
injections   contracture   disease   contracted   procedure   because   surgeries   recurrence   injection   different   surgery   Wolfgang   contraction   nodules   Reoccurrence   brianprice   experience   swelling   Xiaflex   surgeon