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my xialflex experience
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06/07/11 07:52
dianes

not registered

06/07/11 07:52
dianes

not registered

my xialflex experience

Hi all, I used to be on this forum a lot but have dropped back of late. Just doing other stuff and my dups had sort of laid low for awhile. Then new nodules began. After some cortisone and needle work Dr. Denkler recommended xiaflex in both hands. Had left pinkie that had been badly contracted but improved with surgery and NA. It was bending again and right hand had quite a few painful nodules. So while Dr. D wasn't going to break any cords, he thought the enzyme would hold off the progression. So in mid April I got five shots in each hand using one dose of the drug total. Left hand was on the pinky finger cord and right was on the various nodules in the palm. Dr. gave me a pretty good local anesthetic dose so I could drive 6 hours home. Even so, my right hand got pretty sore and the next day I used some pain killers. I also felt nauseated the day after.

Overall, the treatment was rougher than I expected. I had bruising all the way up my arms and quite a bit of swelling. Might have been from the driving. Pinky finger was especially tender as it got more of the drug. After 10 days I took another trip and managed to really pull something in my right hand while trying to grab an item in the car. Hurt like the dickens. I still can't make a fist with my right hand. Dr. D though I broke some dups tissue. I think the injury is more than that but I will see him next week when I am in the area. Its certainly much improved from the injury and I have been doing physical therapy range of motion exercises to get it back together but its slow and there is a ridge in my palm that wasn't there before. So we will see what is to be done which is probably just be patient and heal. Dr. says the drug is out of your system in 12 to 24 hours so would not have been active when i injured myself. Dumb thing to do.

Left pinky is still sensitive to touch and still has bruising. I think its new bruising as only a slight bump or removing a bandaid makes it bruise. I have measured pinky with my own goniometer and it is a few degrees straighter. And I do think the nodules in my right hand are smaller. I still put a big flat band aid on my right palm and a little gauze over left pinky and sometimes latex gloves when I do my art work. I am perhaps 70% back to normal and hope to regain the rest of my usage soon. I also have previously existing arthritis in my right thumb joints and because I could only use thumb and index finger on my right hand for awhile, the arthritis has really kicked up from usage. I had to use a weight lifting glove on my right hand to be able to drive but don't need it now.

So overall the experience was rougher than I expected. Dr. said I had an unusually strong reaction to the enzyme which he has used on many patients. Since we used it to try to slow the progression of the disease its hard to judge if all this was worth it. If I get a couple of years with the disease being minimally active, then I guess it is. If it starts up again soon, then maybe not.

Anyway, I will see the excellent Dr. D next week and will have a follow up report. Anybody out there who gets xiaflex, be very careful with how you use your hands for quite awhile after it is administered. I injured my hand about 10 days after getting the drug and while they may be unrelated, I don't think the item I grabbed in the car with my middle two fingers was anything that I couldn't have normally done.

Has anyone else had such an experience? I sort of have trouble navigating around this site so I appologize if I have posted this in the wrong category.

DianeS

06/07/11 16:22
flojo 
06/07/11 16:22
flojo 
Re: my xialflex experience

Thanks for your thorough description of your Xiaflex experience. I'm hoping my pinky doesn't contract a lot. It's only about 5-10 degrees but slowly getting worse. Scheduled for NA with Dr. Denkler mid-July. Will discuss possible Xiaflex in one place on my pinky but not in the July session.

Keep us posted and best wishes for slowed progression.
Flora

06/07/11 18:57
LubaM. 
06/07/11 18:57
LubaM. 
Re: my xialflex experience

I have had NA twice for my right pinkie and both times the treatment seemed to be a breeze in comparison to what DianeS. describes for the Xiaflex... no adverse reaction, no swelling and very little pain. Unfortunately, the NA hasn't been successful for me, since the contracture returned within six months both times.

I'm anxiously awaiting to see if Xiaflex is worth going through all the pain and problems. Diane, please keep posting your long-term results.

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