I had xiaflex treatment two days ago. I'll provide a summary of my early experience, but some history first.

I have had active Dups for six years and am now age 59, male. Both hands affected, but litlte and ring finger on right hand most affected, with moderate contraction and many nodules. MP joint at -55 degrees; PIP joint at -35 degrees.

I had NA almost exactly a year ago and that was successful...for 8 months. Had rather rapid recurrance of contracture.

I followed clinical trials and approval of xiaflex and contacted one of the physicians in the clinical trials once it was approved. Had consultation which found me a candidate for xiaflex. I am lucky to have good medical insurance, which promptly denied coverage saying xiaflex was "an experimental treatment". Insurance seemed to prefer surgery. I appealed decision, worked with both my insurance care management team, doctor and I wrote a detailed rationale for xiaflex treatment. After initial denial, I urged a peer-to-peer review, so my doctor and the care management doc discussed and I got limited approval for xiaflex.
Then the fun began!

Following approval the medication needed to be shipped by a speciality pharmacy to my doctor and the insurance co and several specialty pharmacies went back and forth for several weeks, each denying converage or responsibility for the medication. I kept calling my insurer, doctor and pharmacies, never getting angry but remaining determined to get the medication. Finally the drug was shipped to my doc. The lesson here is persistence.

Had xiaflex treatment. The first day I saw my doctor who injected one vial of xiaflex in three places in the nodule on my little finger MP joint. Total procedure took five minutes, with about 30 seconds of moderate pain duing the injection. Then I was told to go about normal activity and retun 24 hours later for hand manipulation. We enjoyed an aternoon walk, a museum trip , dinner and the evening. No discomfort.

The next morning I awoke, no pain, and ready but anxious about the hand manipulation. Went to doctor, seen immediately, and first the hand was sprayed with a numbing cold, then local anesthesia was injected. This injection was painful for about a minute.
After 20 minutes the doc came and manipulated the hand. Before beginning he said "its probably best not to think about what I am doing now" so we talked about his and my golf swings, etc. I felt nothning. He straightened the fingers in a couple of minutes.

I am now 24 post manipulation. I had some pain after the anesthetic wore off which I tereated successfully with two does of three advil. Some bruising in the nodule area and some swelling. I would characterize both as minor. I am currently typing this message using the affected hand. I slept soundly and have no pain today.

I have a splint to use at night for three months, just as I did after NA. I will wear splint duirng the day for the next few days because the hand feels so good it is tempting to use the treated hand too much. I want to give the bruised area time to heal before adding strain.

In summary, xiaflex is not a cure and the contracture may return. But, wow, this is a great treatment and was actually less painful than NA (but neither procedure is bad) and I like the early evidence that Xiaflex may , indeed, slow the return of Dups.

If anyone wants more info, post a message and I'll check back occasionally. -
Dave T

@dave t:

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I have a splint to use at night for three months, just as I did after NA. I will wear splint duirng the day for the next few days because the hand feels so good it is tempting to use the treated hand too much. I want to give the bruised area time to heal before adding strain.
Dave T

Edited 06/27/10 18:36

Thanks for posting all that detail. What an incredible mess with the insurance company, etc. - I don't think I have the patience for it, so I'll be waiting awhile on Xiaflex and may have NA again.

@DaveT

my husband is in a similar predicament, with our insurance company refusing to pay for Xiaflex even though his doctor says he is a perfect candidate and would benefit greatly form the treatment.

Could you please explain in more detail how you got your insurance to approve the treatment for you?

Thank you very much!

You said that you wrote a detailed rationale for xiaflex treatment. Would you mind posting it so that others could benefit from something that has worked with an insurance company? It may not work with all of them but it's a start and I have found precedence usually helps. If possible, could you also mention your insurance company. In case it is the same as mine I can use that to my advantage. If not, then I may switch to them in the fall during the insurance election period. thank you