Mayo Clinic Connect
I have Dupuytren’s Contracture Disease . How can I cope with this?
Liked by Leonard
Hi @cindiwass that must be confusing. You may have noticed I moved your post to this existing discussion on Dupuytren's contracture disease so that you can see what others have had to say about this. Simply click VIEW & REPLY in your email notification to get to your post.
@capausz @lioness and @rosemarya have experience with Dupuytren's and may be able to share their experience.
If you are worried about the current rheumatologist he is seeing, do you have another in the area you can go see?
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@cindiwass A friend of mine has this and she has tried everything but P.T. helps her the most outside of surgery to fix it but then your having a new problem . Wish you well. Thanks Ethan for the invite .
Liked by Rosemary, Volunteer Mentor, JK, Alumna Mentor
@jakedduck1, yes, Jake, I could open my hand almost totally, including my ring finger. However, it was very painful. In fact, it got to the point that my hand had a deep ache all the time. That went away within two weeks after the injection and my hand started to flatten out.
What kind of Injections did you get in your hand
Hi, jennifer2010. My husband has Dupuytrens Contracture. He was treated with an injection of Ziaflex around 6 years ago with good results. He could open and close his hand, and he passed the test by being able to flatten his hand on a flat surface. The drug had to be approved by the pharmacy before he was treated.
Now we are noticing that his hand is slowly redeveloping the contracture. When we returned to consult with the hand surgeon,we were told that she does not use the injection treatment anymore because it has not shown satisfactory results for most patients, and the contracture returns. She has advised us that when it becomes problematic for him to open and close his hand, it would be time to consider the surgical procedure.
My husband did not have any difficulty or discomfort with the Ziaflex injection. We were both surprised to hear her response. I don't know if all doctors are in agreement about doing surgery, or if they still use the injection. Have you been evaluated for the contracture? What kind of treatment is being considered for you?
Liked by John, Volunteer Mentor, JK, Alumna Mentor
Hi Rosemary @rosemarya, I haven't seen the doctor yet but think I might have Dupuytren's Contracture in my right hand. I do have severe carpal tunnel mostly in my left hand. I went to Mayo and did get a shot in the hand but it didn't help at all so I've basically just lived with it. Recently my right hand has become closed when I'm sleeping and difficult to straighten out without some pain. It gets better during the day but still difficult to flatten my right hand. I happened to see an ad on TV by John Elway the ex Denver Broncos quarterback who has Dupuytren's Contracture and went to the website and it pretty much describes how my right hand is affected – https://www.factsonhand.com/. It doesn't seem bad enough to do anything yet but it is on my radar ☺
Having worked there, I would highly recommend sending a written message to your hand surgeon, explaining what your experience is with that injection, and asking for another.. It might be that after people are helped, they just don't go back to the doctor, so they might not realize the "full" extent of success (not to discredit their long-term studies), but what works for someone doesn't mean it works for everyone.
Having it work before, should be case enough that if you ask for the injection again with your experience would be medical justification, they should do it again. What I have discovered is we have to take control of our health, so if something works, keep doing that before you go the surgical route.
Also, sometimes if people wait too long with a situation, it gets past the point that an injection might help. He should be examined and request what you'd like before waiting until the point that surgical intervention is the only option.
I.E. My husband was procrastinating on shoulder surgery, thinking the older he became the longer it would last. Pain and meeting our annual maximum on insurance finally got him to the shoulder surgeon's office. Tests showed he had large fluid-filled cysts INSIDE the bone, and since bone is porous, it filled the area and eventually REPLACED the bone in those spots, plus some arthritis. The surgeon said he was fortunate to come in and go ahead with his surgery now because had he waited, once the bone gets to 50%, they CANNOT even do the surgery! They need 50% of the bone there to adhere a new shoulder joint to. I guess what I am saying is please do not wait to see a doctor…go in once you see symptoms happening since there is usually something they can do (if not switch doctors for a different opinion), and also TELL THEM what you feel it is (bring printout if necessary) and since the injection worked before, why not try that first before waiting until it's too late, and surgery is the only (painful, long-term, expensive) option.
Liked by John, Volunteer Mentor
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