| Appointment with Dr. Costas today |
|
|
1 2
|
| 1 2
|
|
01/20/2012 19:35
pia2some 
|
01/20/2012 19:35
pia2some
|
Appointment with Dr. Costas today
Today I went to Atlanta to see Dr. Costas. He was one of the doctors involved with the trials of Xiaflex. I'm a 48 year old female and he did say that it was not the norm for females to develop this at my age. Today was the first time I've had a specialist examine my hands. I just wanted an opinion and to know what my options were.
He told me that my middle and ring finger had a 25 degree bend and the pinkie was still at 10 degrees. These are on my right hand. The left hand has nodules starting but no cords or contracting. He said I was a perfect candidate for the Xiaflex. That if I were to treat my right hand now, the success rate would be good. He said I would need 4-5 injections.
His office staff talked to me for a while about insurance and cost. Right now, Auxilium is paying up to $1000 of the co-pay PER injection! They started this in September and they will continue until the end of 2012. Their office has treated quite a few patients who used the Auxilium program and paid zero out of pocket for the medication. The only thing they had to pay was the co-pay for the two office visits (per treatment). That makes this really tempting to go ahead and do.
I guess my biggest concern is about injecting a foreign substance into my body. I really wish there were longer term studies about the effects of this medication before I needed to make a decision.
~dawn
|
|
|
|
|
01/23/2012 15:19
pia2some
|
01/23/2012 15:19
pia2some
|
Re: Appointment with Dr. Costas today
I'm still pondering the decision to have the Xiaflex injections.
One question some of you may have an answer or opinion on ... If I have injections now and they are successful, the chance of it recurring is still pretty high, especially since I'm 48. Does anyone know if they can repeat Xiaflex injections over the years? I read that allergic reactions increase after 3 injections. But I'm wondering if you have treatments, say every 10 years. Can that be done?
|
|
|
|
|
01/23/2012 16:40
callie
|
01/23/2012 16:40
callie
|
Re: Appointment with Dr. Costas today
What did they say about having surgery?
|
|
|
|
|
01/23/2012 23:04
pia2some
|
01/23/2012 23:04
pia2some
|
Re: Appointment with Dr. Costas today
pia2some:
I'm still pondering the decision to have the Xiaflex injections.
One question some of you may have an answer or opinion on ... If I have injections now and they are successful, the chance of it recurring is still pretty high, especially since I'm 48. Does anyone know if they can repeat Xiaflex injections over the years? I read that allergic reactions increase after 3 injections. But I'm wondering if you have treatments, say every 10 years. Can that be done?
That wasn't even discussed. There's no way I'd have surgery now. My hands are not that bad at all. I'm just a good candidate for the injections because my contractures are only at 25 degrees.
|
|
|
|
|
01/24/2012 23:00
Larry
|
01/24/2012 23:00
Larry
|
Re: Appointment with Dr. Costas today
If all other digits are less involved, you should consider RADIOTHERAPY for all of these, as it might stop the progress of your disease considerably parallel to the Xiaflex injection for the most disabled digit ! Larry
|
|
|
|
|
01/25/2012 04:47
flojo
|
01/25/2012 04:47
flojo
|
Re: Appointment with Dr. Costas today
I agree with Larry. Read on this website about RT/radiation therapy. It is effective for early Dupuytren's with nodules and only a little contracture.
Some people have had good success with Xiaflex. Use the "Search forum" option in the left column and put in Xiaflex. It'll bring up lots of posts about Xiaflex.
|
|
|
|
|
01/25/2012 06:08
pia2some
|
01/25/2012 06:08
pia2some
|
Re: Appointment with Dr. Costas today
flojo:
I agree with Larry. Read on this website about RT/radiation therapy. It is effective for early Dupuytren's with nodules and only a little contracture.
Some people have had good success with Xiaflex. Use the "Search forum" option in the left column and put in Xiaflex. It'll bring up lots of posts about Xiaflex.
I've read all the information I can find on all of the various treatments. At this time I am not able to travel to get treatment so that limits my options.
|
|
|
|
|
01/27/2012 08:58
wach  Administrator
|
01/27/2012 08:58
wach Administrator
|
Re: Appointment with Dr. Costas today
There is no long-term experience with Xiaflex yet but I wouldn't see a reason why you couldn't have it every 10 years. Alternatively you could also consider needle fasciotomy. In 10 years from now there ought to be well founded comparisons between those two treatments available.
Wolfgang
pia2some:
I'm still pondering the decision to have the Xiaflex injections.
One question some of you may have an answer or opinion on ... If I have injections now and they are successful, the chance of it recurring is still pretty high, especially since I'm 48. Does anyone know if they can repeat Xiaflex injections over the years? I read that allergic reactions increase after 3 injections. But I'm wondering if you have treatments, say every 10 years. Can that be done?
|
|
|
|
|
01/27/2012 14:38
hammer 
|
01/27/2012 14:38
hammer
|
Re: Appointment with Dr. Costas today
I was in Oaklahoma for the multiple cord clinical study Tues and weds and that come up in the conversation.They r doin a long term follow up on the people from the first study 6 years ago and so far the reacurance rate arround 10 percent so far.
|
|
|
|
|
01/28/2012 18:19
pia2some
|
01/28/2012 18:19
pia2some
|
Re: Appointment with Dr. Costas today
hammer:
I was in Oaklahoma for the multiple cord clinical study Tues and weds and that come up in the conversation.They r doin a long term follow up on the people from the first study 6 years ago and so far the reacurance rate arround 10 percent so far.
So at this point, even at six years out, you only have 10% of the people having it recur. That's good to know. From my understanding, the recurrence rate also has to do with how advanced the disease was at the time of the injections.
~dawn
|
|
|
|
|
|
1 2
|
| 1 2
|
46 users online
Login
