July 20, 2010

Update on Dupuytren's

I got an email from Ann Whitaker in Waco, TX who is the first person I've heard from who's had the enzyme injection for Dupuytren's since it's been on the market. So I wanted to share her story. Lots of good info here. Ann's contact info is at the end if you have any questions.

Just wanted to thank you for participating in the trials for Xiaflex. I've had Dupuytren's since 2003 (or maybe before and didn't notice) and had been waiting for an alternative to surgery.
Like yours, mine isn't painful or debilitating but ugly and annoying. I definitely didn't want surgery because I can't imagine not having the use of my hand for weeks. I have long, curly hair (no way I could wash it and comb it left-handed). Like you, I do a lot of writing, and I just can't imagine how I'd function with only my left hand.

I had the first treatment a month ago and my second two days ago. Since I'm now on Medicare (66 last Feb.), that and Aetna, my supplemental, will pay all but $138 each time.
I really like my hand/ortho doc (40-ish, so I assumed he had steady hands), but I felt I knew almost as much as he did after reading your blog, watching your YouTube videos, and reading the physician's and the patient's manuals.
Too, I was the first person in Waco to take the Xiaflex plunge (not as scary as bungee jumping, which I would not do) and my doctor was a Xiaflex virgin, though he had done the needle aponeurotomy. The drug rep was even in attendance to make sure the vials were mixed properly and nurses kept coming in to watch. If my doc was nervous, he didn't show it. If he had, I might have backed out. Then there was the fact they'd ordered this stuff just for me.
My husband kept calling me a "lab rat." You, however, are the real risk-taker. You were really brave to undergo all that pain twice. And thanks to you (maybe the screaming helped), the technique has been refined.
When I went back for the first manipulation the next afternoon, I was prepared for the worst and hoped the pain would be tolerable. I'd also insisted on going alone. When I asked the drug rep if anyone had screamed when she'd witnessed the manipulation in Austin or Dallas, she looked baffled and assured me they hadn't.
So I had no idea he would deaden my entire hand. That part was not in the literature I read. But he did. In fact, he used two different "caines," a short acting and a long-acting, and my hand was still completely numb at midnight. I thought about you a lot that day. I also thought--when this wears off, my hand is going to hurt like hell. It didn't. The pain from the deadening was the worst part, and it elicited only a contorted face on my part when he stuck a really long needle into my wrist, causing involuntary movements of several of my fingers. And, no, contrary to what my husband thinks, I do not enjoy pain.
My first treatment was for the area under my pinkie, more on the palm than the finger. This week was for my middle finger, mainly puckering and drawing up in the first segment. More swelling the second time, but today it's almost back to normal.
My main fears were that he might rupture a tendon, inject the solution into an artery, or that I'd go into anaphylactic shock. He admitted there was some risk but assured me they had a crash cart nearby. Luckily, none of that happened.
I have to wear a brace at night for four months (ugh) to keep the cord from reforming. That has been a challenge, but I want it to work, so I'm trying to be a good girl. And no mummy wrapping. He sent me home after each injection with a bandaid, telling me to use the hand, just not try to pop the cord myself. No problemo there. Nor did I have any gashes. Yikes. Yours looked painful. I had just a couple of tiny tears.
After four months I'll decide whether to do the thumb area (so far all this has been on my right hand). I didn't even notice the thumb was affected so I may skip that. But the pinkie on my left hand has a nodule that causes my finger to bend, though I can straighten it manually, so that's a maybe.
I didn't intend to write so much, but I did want you do know that your blog and videos were very helpful when I was trying to decide what to do. I've found the entire process fascinating, maybe because, as my doc said yesterday, it's "cutting edge."
I'm sorry the woman who wrote you may have to pay for her treatment. I would think insurance would pay if it's causing her a loss of dexterity or pain. It's still cheaper than surgery, so I'm thinking insurance companies would save money since it's all out-patient.
Anyway, feel free to share any of this with anyone who contacts you. The fact I'm even typing virtually pain-free the next day is amazing to me, and the swelling has almost all subsided.
Thanks again and congrats on your book. It looks like a fun (and well-written) read, and I've ordered a copy.
Your Texas Xiaflex protégé,


Ann Whitaker said...

I might add that I was starting to lose some dexterity and experience some pain if I tried to open my hand too wide. I also felt it might be prudent to do something about it before it got any worse.

toni in san diego said...

Hi sisters,
(interesting no men have responded, as @ 90% of patients are men, according to my doctor in San Diego.)

i had surgery on my right ring finger in oct 09--procedure was a breeze, and i was very careful about pt--2-3 times a week for 6 months. and, i was in pain (7-8 on the 10 point pain scale) for the entire 6 months. However, it was a total failure--finger is bent just as badly as before (about 100 degrees) and i have a very ugly, gnarly, raised and puckered scar over my whole palm and finger.

(surprising to me, this was done by a certified hand surgeon with impeccable record.)

but pain is finally gone. the doctor (in fact several doctors) have recommended i have it done again. so far, i'm not doing that--will put up with ugliness and awkwardness, just thankful it no longer hurts.

btw, my insurance is also aetna--which balked at PT after about 3 months. their rules authorized only 60 day PERIOD for pt, which wasn't nearly enuf, so i paid out-of-pocket after that. according to my doctor, tho, that rule has changed, and they now allow 60 days of therapy--no matter how long it is spread out.

but, now i've got to deal with the 6-7 ropes in my left hand--3 fingers and the thumb, all with affected "pads" in between. doctor again recommended surgery, but aetna paid for 2'nd opinion, and the new doctor prescribes enzyme.

obviously, this whole process hasn't gone very well for me, so i'm still deciding what to do. i know if my thumb gets worse, i will have absolutely no use of the left hand, so it's obvious i need to do something.

thanks for your utube video and your blog; wish i'd found it before my disastrous surgical experience.

toni in san diego

toni in san diego said...

oh, one more thing. i wore a very ugly and encumbering brace on my hand--lots of metal and velcro, from the tips of all my fingers to just above the wrist--for the entire 6 months, 24/7.

Samantha Hoffman said...

Hi Toni,
Actually I've gotten lots of emails from men, they just haven't posted here. I'll be posting an account from someone who's waiting for the injections. Stay tuned.

Anonymous said...

Hi All...

I am a 53 year old man who has been dealing with this for about 7-8 years. My older brother and sister also have it. That said, my brother had surgery about 10 years ago and the DC is manifesting itself again (both hands). He told me a couple of years ago about the injections and again informed me they were available in February 2010. I went to my hand surgeon and was informed the injections were $6,000 per hand, each time. As I'm of somewhat limited means (kids in college, etc), I approached my insurance company, Blue Cross Blue Shield. From there it's been something new every month. They first denied coverage, but then relented somewhat. After appeal, they came back and approved the drug, but not the procedure (go figure). They said the procedure "code" was filed wrong by my surgeon's office. The whole situation is now back with BCBS, as it's under appeal. What started as hope in early 2010 has now turned to disgruntlement in February 2011, but I'll hang in there. I just hope there is some kind of light at the end of the tunnel.I will say my DC has become somewhat painful and does keep me awake some nights. Also, I'm from the Kansas City area and would sure like to get a second opinion on the shots, as my surgeon has prefromed this only a couple of times. I did talk to one of the recipients and he said he noticed no good results, so I don't know what to think in all of this. Bummer.

Samantha Hoffman said...

I'm sorry you're having to go through all of this. I've heard that the injections are about $3000, not $6000. And I've also heard good reports on the results. So if I were you I'd do more research.
Check out this website for more information: http://www.dupuytren-online.info/
You're not that far from Chicago (or another major city). If it costs a few hundred dollars to fly here for the injections it might save you money and anxiety in the long run.
Just a thought.

Kent said...

Thanks Samantha..

Around the KC area that $6K price tag seems the norm, but I might take you up on the Chicago advise. Too bad we have to endure this condition, but things could be worse. Thanks for the info on the website ! Best regards,


Anonymous said...

Kent: There is a great deal of insurance coverage with Xiaflex. You need to have the doctor's office run an insurance verfication and see what your benefits are... you will not be expected to pay the 3000.00 or 6000.00. Generally you will only be required to pay a co-pay or a deductible.. it just depends on what your level of benefits are.. Some patients pay nothing. Keep your chin up and have the doctor's office check it out! Don't let anyone tell you it will cost you thousands of dollars. This is not true.

Leslie said...

Our Facebook Forum, Dupuytrens Disease Support Group was formed a few months ago. We have 7 world class physicians who join us for what we call "Coffee Talks" which are a Q&A live in the forum newsfeed. This Sunday, March 20th at 1 PM EST, Dr. Charles Eaton, Founder of the Dupuytren Foundation, will present. I hope you will join us. Please visit our website to learn more about our forum and from there you may request membership. Thank you for sharing, best wishes to all: www.dupuytrensdiseasesupportgroup.com