| Questions about DDand Xilaflex injections |
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01/21/2011 16:16
doug 
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01/21/2011 16:16
doug
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Questions about DDand Xilaflex injections
Greetings and sympathies to all who must suffer DD, I was recently diagnosed with duputren's in my left(dominate)hand.I have cords, nodules and some contraction in my little finger; also showing early symtoms in my right hand. Don't know how long I've had it. They're is also a family history.I've also had rotator cuff sugery oct.'10 to remove a bone spur in my left shoulder.I'm rehabing presently,recovery has been hampered by some capsulation and/or scar tissue.The duputren issue makes it harder to use the pulley and theraband exercises.I'm presently waiting to learn if United Healthcare will cover the Xilaflex injections. I was wondering a few things; does the doc inject the nodules or only the cords?Should'nt the doctor document the condtion with Xrays,ultrasound,or some other method? How long is the recovery? Should someone who works construction expect to go back to work? I'm 57yrs old, a heat and frost insulator,for 26 years,use many hand tools,standing on a ladder most of the time and frankly, if you can't use your hands,you're useless.I'd rather go back to work than to apply for SS disablity. This forum has been helpful for learning what I'm up against so advice or thoughts would be appreciated...Thanks, Doug
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01/22/2011 04:48
dCinNYCnot registered
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01/22/2011 04:48
dCinNYCnot registered
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Re: Questions about DDand Xilaflex injections
does the doc inject the nodules or only the cords?
When my doctor injected the Xiaflex he did so to the cord which was the source of the contraction.
Should'nt the doctor document the condtion with Xrays,ultrasound,or some other method?
The first doctor I went to (who did only fasciotomies/surgical removal of tissue - not Xiaflex) did xrays but the doctor who did the injections did not need to since the symptoms were apparent to him without.
How long is the recovery?
I was able to function after the injection as long as I did not bump or hit the bruising/swelling which lasted about 5 days. My hand was back to full normal use after about 8 days of incorporating stretching and exercising the finger. I had full flexion immediately after the cord released.
Should someone who works construction expect to go back to work?
If your recovery is anything like mine was, most definitely yes. My hand and finger is back to full flexion and use. The Xiaflex was administered 7 weeks ago and I've pretty much forgotten it was ever contracted.
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01/22/2011 11:39
ellenpao 
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01/22/2011 11:39
ellenpao
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Re: Questions about DDand Xilaflex injections
I've posted a Xiaflex journal with my experience - take a look at that - it might help.
Why are you going right to the injections? I think I'd try the NA first - it's much easier and literally has no recovery. In my mind, the NA should be done (even continually) until it is no longer viable or effective. The Xiaflex should be the second step, not the first.
Have you had NA?
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01/29/2011 01:55
doug
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01/29/2011 01:55
doug
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Re: Questions about DDand Xilaflex injections
Received word from CVC Pharmacy. UnitedHealthcare agreed to pay for Xilaflex;my plan covers 80% so that leaves me shelling out nearly $900.00(plus $600 for this years deductible). Since I've been out of work the past 5 months with the rotator cuff surgery,I've depleted my bank account,so I'm S.O.L. I'm making up my mind to go back to work and just tough it out,no other choice really. I am peaved that Xilaflex is prohibitively expensive. I'm no marketing expert but,they are not going to sell much if no one can afford it. The pharmacy rep I spoke to did mention the Xilaflex assistance plan and I have seen it on their website,I don't really believe they're going to assist anyone with any insurance,but that is for them to say,not me. My 61year old sister,never married,hairdresser, uninsured, has lupus, probable stage 2 duputren's is one who would qualify maybe.Has anyone been down this path? ellenpoe,thank you for your post, I chose Xilaflex because it sounds like the cords are attacked and destroyed by the enzymes as opposed to merely snapping them.Information is fuzzy about this. Due to the cost however,I will reconsider N/A. There is only one, Dr.N. Patel, here in Dallas that does N/A and I have no knowledge of his experience and haven't been able to glean any info from the internet. Thank you also dcinNYC for your post. Good luck and God bless to you both!...doug
Edited 01/29/11 16:28
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02/01/2011 19:50
bstenman 
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02/01/2011 19:50
bstenman
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Re: Questions about DDand Xilaflex injections
Be sure to check the procedure with your doctor and the coverage from your insurance company. The three doctors I spoke with in California all follow a protocol where one injection is done and if a second is needed it will not be done for at least 4 weeks and each injection requires a vial of the Xiaflex. The insurance company may pay for the first vial but not the second or the third.
If you need three injections your out of pocket may be $900 + $3900 + $3900 = $8700. Auxilum discounts the first vial of Xiaflex and sells it for $3400 but each additional vial or prescription is priced at $3900.
I can have a NA procedure done every 4 years for the rest of my life and the cost will be less than one round of Xiaflex treatments which may or may not last as long as the NA and statistically the Xiaflex has a greater chance of serious complications in terms of ligament and tendon damage - at least that is what my doctor who was involved with the Stanford drug trials told me.
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02/10/2011 15:15
dave tnot registered
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02/10/2011 15:15
dave tnot registered
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Re: Questions about DDand Xilaflex injections
It is not accruate that all ins cos will not pay for a second or third round of xiaflex if needed. Since we are all searching for information on this terrible disease, please try to be accurate with the info you share. Maybe some ins cos resist a second or third round of treatement, but my BC/BS paid for three rounds (after I appealed thier intial decion not to pay for any). Thanks.
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