Hi,
We live in the Albany region and my husband has had two Xiaflex injections at Schenectady Regional Orthopedics with Dr. James Smith. We have CDPHP as well and we filed for a review with CDPHP twice and were rejected twice. Short of filing a complaint with the Federal Government against my husbands employer we got no where with CDPHP until my husband spoke to his HR person at work. Not sure who your employer is John but if you have a HR department go to them! Because my husband's employer has a branch of the company in Ohio which is covered by Anthem insurance and Anthem insurance covers Xiaflex injections in Ohio,his HR person got approval for his treatment with Xiaflex here in NY. So CDPHP was told to cover the cost and the employer picked up the cost, we have paid copays only.
Don't give up, Xiaflex has helped my husband immensely. If you can switch to MVP then that is the faster route to get the Xiaflex injections. My husband's employer does not offer MVP to their employees. The saddest part is CDPHP is not moving forward with newer treatments. My husband has his left pinkie and ring finger involved. The pinkie was very contracted and the ring finger to a lesser degree. He has had two injections so far and plans for a third. He is receiving occupational therapy with splinting and bracing and finger exercises. He can almost straighten his pinkie now. He needs one more injection in a cord that is affecting both of those fingers. He started this in April of this year and has been able to work full time, not be out on disability for surgery, healing from surgery and possible complications of an open wound.
Contact Xiaflex themselves at theire 800 number they have been most supportive in making suggestions about how to file a review etc. We even explored having the Xiaflex drug sold at a reduced cost but you have to file paperwork re: your income. We did not qualify. Don't give up!!!

Edited 09/06/11 14:57

I was just diagnosed with DC last week by Dr. Zanaros at the Bone and Joint Center in Albany. He only just started doing injections for those with contracture a couple of months ago, waiting for news of side effects for the first six months before giving it a go. I'm not a candidate. I have nodules only.

What bothers me is that he seems to think something else is causing my pain, not the DC, and he's sending me to a Rheumatologist after my blood test came back negative for RA or Lupus and x-rays come back showing no arthritis in my sore swollen knuckles. He mentioned cortisone injections but nothing about radiation or NA. He basically said I have to live with it until my fingers curl and the injection can work. Nodules go untreated.

I found this forum because I wasn't willing to accept that. I'm so grateful to learn from those who have shared here. I see now that NYU may offer radiotherapy. I'm either going to educate Dr. Zanaros about what I want or, if he's not willing to go that rout, find another doctor. From everything I've read, I'm at the perfect stage for radiotherapy and time's a-wasting. It's on a rapid advance in both hands.

If anybody finds a willing radiotherapy doctor in Albany, please do fill me in! If I find one first, I'm happy to share.

Hi Marilyn (or should I say neighbor),

I'm near the Rensselaer/Columbia county border. I'm certainly happy to keep in contact and share information! Thank you for the recommendation.

What I'd really love to know is why Dr. Uhl doesn't consider RT a viable option? From what I understand, it's only viable during N stage, which is where I'm at. Were you not a candidate because your DC was too advanced, or because he knows of issues with the treatment. I'd like to know the pitfalls of trying because, as far as I can tell, the window for RT therapy is narrow. I feel like I'm in a race to find answers and, if possible, treatment that can stave off progression before it's too late and I'm left facing procedures that essentially scare the hell out of me.

I'm still waiting for an appointment with an RA specialist, to be set up by Dr. Zanaros's assisitant (hopefully today). Dr. Z says I can have RA and not test positive. I'll try any option to stop the ache and burning. The increased pain is maddening. As a writer, photographer, videographer, editor and web designer, this is hugely impinging on my daily activities, not to mention my sleep.

Be well and I'm so glad you found somebody you trust.
Kim

Hi Kim!!

We REALLY are neighbors. I live right near the Rensselaer/Columbia line in Columbia County. I taught at Maple Hill for a gazillion years, as well.

Dr. Uhl did not feel that the radiation treatment met with much success. Whether he was basing that on the fact that the finger was quite advanced, I'm not sure, but seeing as though I'm still at the nodule stage on the one hand, I interpreted his answer to mean that he just didn't think it was a viable alternative. I could be reading into that, though. Every patient is different.

I certainly can understand your concern, and I hope that you can find some answers to your situation that is workable for you!!
Marilyn

Hi Marigail,

I just wanted to follow up with how it all worked out.

I called Dr. Weiss in Richmond, VA about RT therapy and was guided through the process with such wonderful care. When I dialed reception on a Friday morning, I was able to speak with Dr. Weiss directly and we agreed a visit was worthwhile. By that afternoon, Odell at reception made me an appointment for Monday, a week's accommodations at the Hospital's Hospitality house for a $15 donation per night (in walking distance from VCU's state-of-the-art facilities and downtown), and called my insurance company (MVP) to ensure procedures were covered. I bought my airfare and flew out two days later.

When I landed in Richmond, I took a 15 minute cab ride directly to see Dr. Weiss. My full history was recorded, my hands and feet examined, a cat scan determined the depth required for treatment, and two metal plates were designed to outline the treatment area, one for each hand. By that afternoon, I had my first RT session on both hands and it lasted about a minute. The staff in every department was impeccably professional, courteous and downright kind. From then on, I simply showed up at 8:30 a.m. and got a quick zap each day for the rest of the week. Otherwise, my time was my own and Nurse Betty had the staff create a list of fun things to do in the area - all within walking distance.

I'm now three weeks out and notice that the pain has reduced greatly. The nodules on both hands seem somewhat smaller too, if only a bit. I've read from others here that the differences become more significant during the second week of treatment, which is scheduled for mid January. I look forward to the return visit and increased results. Some have said that they felt a mild sunburn, which I did too two days after treatment ended. It lasted only about 3 days and was so mild, I barely noticed but for running hot water over my hands. I'll keep you posted on round two.

BY COMPARISON

It's hard to believe that all the RT arrangements transpired and were complete within a week out of state. By comparison, the Bone and Join Center took 4 weeks to get me in to another doctor at the Center for Reuhmatology (same building) for inflammation issues. Why does the Bone and Joint Center only self refer at the expense of patients in sleep depriving pain?

I am turned off to the Bone and Joint Center entirely at this point. Aside from offering no hope where some clearly exists, I have never seen such a trail of bureaucratic mismanagement at every single turn.

- I left a message for Dr. Zanaros asking his opinion about RT therapy. His nurse delivered an answer referring to RT for rheumatoid arthritis - to which Dr. Zanaros' response was "absolutely not." Since he didn't call me himself, I wasn't able to clarify the question.

- Then, unbeknownst to me until the reminder call came, I was scheduled for a follow-up appointment. I hemmed and hawed, then went anyway thinking Dr. Zanaros had new information to share with me. Nope. Neither one of us knew why I was there. He shook my hand, thanked me for the education about my first round of RT therapy and the front desk charged me for my newly researched and shared expertise. They insisted that I made the appointment. I did not. This became a fight, which I lost [read: gave up]. I had taken the doctor's time - which was chargeable.

- Later, when I clearly requested in writing that my records be transferred to the rheumatologist of my choice rather than who they referred me to, instead, hard copies were sent to my house along with a bill. I had had it. My lawyer, as a favor to me, sent a letter requesting a refund and the proper delivery. On a copy of my original request, the address to deliver to was clearly circled for clarification. Their error ultimately delayed my ability to make my own appointment outside the Bone and Joint Center network by another two weeks.

Ironically, the last time I was in that building, a flyer was taped to the elevator saying that they were working on improving customer service... Fail. I'd suggest they work harder.

Edited 02/24/12 17:34