Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
My mother is 75 and of born and raised German descent. She was diagnosed with Dupetryns in the advanced 4th stage back in 2000. There are a lot of people that seem to be interested in a 3 therapy comparison and my courageous mom has had all three done in the last 13 years starting with surgery in the right hand, NA in the left, and just recently participating in what I understand is the final phase of the Xiaflex study started in 2007, with back to back injections being done without the 30 day waiting period in between. Why we did this?
Late last year, 2012 with the Dupetryns back in the NA hand, a much thicker cord had appeared drawing the pinky in and exacerbating the boutonniere deformity I'm guessing she got from the disease, as well as forming a deep pocket in the palm that all kinds of things, pills, shampoo, change, etc, would get caught in.....Stage 4 is bad folks. Hers was affecting the MP and PIP of the pinky, to the point that she had almost ripped the finger off catching it in the car door, shopping basket and more. She had even began speaking of amputation... Basically I was desperate for her and ignoring my first instinct to let others take the potential risks, I discussed it with her and we sent an email expressing interest as well as concerns.
This year we were contacted to participate in the recruitment study which is at this time in it's recruitment stage to "assess the safety and efficacy of two concurrent injections of AA4500 in adult subjects with multiple dupuytren's contractures.".
There were only a few studies being done within the US and the closest to us was in Oklahoma City. Yes it was scary and no we did not do it simply to keep from paying the exorbitant cost associated with Xiaflex. It was primarily because of her advanced stage, as well as her age and I could not determine if she would get the relief we were seeking with a single injection. Therefore, we forged ahead...We had the injections on April 16th, 2013 and drew the long straw (THANK GOD) for waiting 72 hours for the actual manipulation. Now though, there seems to be excessive pain, our follow up is this Tuesday, but because it was a clinical study, I have no idea if what she is going through is considered normal or in actuality better or worse than the other therapies.
After perusing this website, reading forum after forum, the big question I have is there anyone on this wonderful site who has participated in this ongoing study? I would really like to compare notes. Hence the new thread.
I plan on sharing her complete story with a detailed personal experience (if I can figure out how to submit it) but, anyone who wishes to send me their thoughts or questions, I hope you will take time to do so and I promise to answer them while adding more about the process and her ongoing recovery, which is the labor for her and the labor of love for me. For now though, it's a beautiful day in Burleson Texas and I need to do a little yard work, I am seriously behind on my chores... Thanks for reading and sharing!
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
Right now, I'm in the midst of that multi cord clinical trial. I had the double dose on April 15 and the finger extension/manipulation on April 16. I posted my experience in the Personal Experiences subforum for this Dupuytren's forum on April 18. I think it's on page 39 or 40, or thereabouts. My 15-day follow up appointment is on Monday, April 29.
As you are already aware, Xiaflex is not a painless procedure. But, I'd do it again in a heartbeat, if necessary, and if my doc advises it, as the first round of injections did not gain me a full release. We'll definitely be talking about that on Monday.
Almost two weeks out and my hand is still sore. The exercises are still quite painful, but I do them anyway and quite religiously 4X/day, as directed by the doctor. But, even though my MCP and more so my PIP are still a bit contracted, I can now wash my face with a relatively flat hand, clean the counters with a full hand, rather than just two fingers, and I can spread apart my fingers. That's huge. Before the injections, I felt like my ring and middle finger were just about fused together, even though one was bent and the other not. I certainly did not have the degree of contractures that your mother has, so getting full release is maybe more likely in my case.
As for the multi cord injections themselves, they do hurt. It was really quite stressful by the time the doc finished the sixth injection. One of the docs told me before the procedure that I was over thinking things and the injections would feel like bee stings. Afterwards, I told her, "Bee stings, my ass!" They do hurt, but it is fast, and again, I'd do it again, if necessary. Also, I was glad to have two cords worked on in a single procedure, rather than knowing I'd be going back over and over again. I do have good health insurance, so money was not the issue for me (though admittedly, the couple hundred dollars out of pocket for the co-pay are better served in my pocket than theirs). But, rather than two days of lidocaine injections, which would have been the case if I had two days of Xiaflex, one month apart, of course, I only needed it once for both cords.
Speaking of the lidocaine injections, she gave me three of them right at my MCPs, palm side, one right at the cord and the other two on either side. She warned me that the extension procedure would be somewhat painful even with the lidocaine. However, my MCP and PIP were completely numbed by them, and the manipulation of the joints was painless. EXCEPT, the numbing effect did not go down towards the heel of my hand, so when the doc grasped my hand, the pain in my palm was excruciating because the Xiaflex inflammation and bruising did extend down my hand. I asked her to inject some more lidocaine there, but my entire hand was so swollen by then, and getting full contracture release was just not going to happen anyway, so she refused. I was disappointed. That is something we will talk about on Monday, as well.
Anyway, that is all I can think of right now. It's late. If I think of anything else, or if you have any questions, feel free to ask.
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
Hi Diane Thanks so much for the reply. Do you have residual pain? How are you doing today. We had our 15 day post manipulation follow up last week and the doc says it looks good but she still has so much pain that comes on suddenly and seems to migrate to different parts of her hand. The good news is that what I mistook for a skin tear was only a burst blister and it is healing well. What's going on with you and have you found anyone else on this site that has had this latest procedure in trial? By the way, did you have any pain on the top of your hand...wondering if this is just bruised badly where her hand was held in manipulation... Thanks Tammy
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
For anyone considering the Xiaflex route here are some pictures. What I thought was a skin tear was a popped blister. It wasn't until I started using a yellow cream called Xeroform that it healed rapidly. Notice the difference between day 14 and day 18. I read about silver nitrate on this site but this worked amazingly well to speed the healing. FYI Ibprofen helps sometimes but don't pass on the heavies if offered...The pain comes and goes and we are 26 days post manipulation today, May 7th, 2013.
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
OMG!!! My hand didn't look nearly as bad as that. I had extensive swelling and bruising, but no skin tears or blood blisters. I'm now three weeks out from the procedure, and my hand is still quite sore, though not unbearable by any stretch (no pun intended_. Doing the exercises still hurts, and now I can pretty much flatten my hand onto the table. My MCP touches completely, but the PIP just will not touch down. In the morning when I take off the splint, it seems that I only have a 5% contracture, but within an hour or two, it goes back to 10-15% and pretty much stays that way for the rest of the day. That's a lot better than 35%, for sure, but I am a bit disappointed.
As for the splint, when I take that sucker off in the morning, my hand hurts!! It's so stiff and arthritic feeling. It takes about 15 minutes to be able to make a fist. Ugghhh, I hate that feeling.
I still have a bit of bruising and swelling, but nothing terrible. My next visit with the doc, my 31-day study visit is next Wednesday. She's going to be quite happy with my results, as am I. Except for that minor residual contracture. Yup, I am quite happy. ~ Diane
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
My husband is also involved in a trial of 2 injections. He did have a fair bit of pain and discomfort but was incredibly pleased with the result. Unfortunately, 1 week after the injections he noticed a swollen ankle. It turned out that he has developed DVT's in both legs and has clots in his lungs. No-one can tell whether there is any connection between the collagenase or not. He did use DMSO a couple of days after the manipulation. Perhaps that it the connection. He had also had a DVT 15 years ago. It is now 2 weeks since his manipulation and he is still in hospital while they treat him with blood thinners.
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
Oh, wow, I am sorry to hear that..very sorry to be sure. What was he using the dmso for? Anything to do with the pain in the hand or unrelated joint pain> ...can you share with me what age he is and also if he was bed ridden after the treatment? Just wondering for the DVT....Did he get his manipulation the next day or a day or two later. Thanks so much for sharing...I am very happy to hear his results so far are good regarding Dupetryns. Tammy
Re: Ongoing Study of Two Concurrent Injections of AA4500 (Xiaflex)
Hi - He was hospitalised for 11 days and has only just been released. The blood clots were also in his lungs, hence the longer time in hospital. He is 63 years old and about 6 foot 2. He weighs about 94 kgs and is in really good health. He was using the DMSO prior to the injections as per the suggestion from the non drug treatment along with Neprinol etc. I thought it may be a good idea to make the collagense more effective to use the DMSO cream. Obviously not correct! None of the doctors can figure out whether the collagenase caused the clots or not. He is now on warfarin again. He did have a DVT back in 1998 when he was run over by a golf cart. Apart from all this - he is really happy with his hand!
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I had extensive swelling and bruising, but no skin tears or blood blisters. I'm now three weeks out from the procedure, and my hand is still quite sore, though not unbearable by any stretch (no pun intended_. Doing the exercises still hurts, and now I can pretty much flatten my hand onto the table. My MCP touches completely, but the PIP just will not touch down. In the morning when I take off the splint, it seems that I only have a 5% contracture, but within an hour or two, it goes back to 10-15% and pretty much stays that way for the rest of the day. That's a lot better than 35%, for sure, but I am a bit disappointed.