Hello Everyone!

Thank you for the forum and all of the good information that you provide. I am 37 and have 2 nodules on my left hand after suffering from a large cut. I don't have any DC in my family and it was really disturbing, as you all know, to have these bumps growing in my hand and then to be told by 2 hand specialists that there was nothing to be done for it except surgery, eventually.

That's when I ended up here at the forum and other online resources to get all the information I could. Radiation therapy sounded like the best bet since the nodules are still growing. I went to Dr. T at Scripps and was barely a candidate for it, because I wasn't experiencing any real limitations. My nodules were progressing and I experience some pain while driving or trying to flex my hand back. Luckily, I don't have any contracture. But, I was tremendously nervous about it and experiencing pain in certain situations. Radiation therapy was going to cost around $6,400 in San Diego without insurance. A little steep and there was always the chance that it wouldn't progress.

So, where is the good news? I have been doing a cleanse and I'm on my third week with Clearvite (an enzyme-based powder) and my hand has stopped hurting and I'm able to flex my fingers all the way back. I was amazed. The cleanse has had me cut out all wheat, dairy, soy, corn, tomato, caffeine, and alcohol. I don't know if my DC is improving because of the supplement or because of my dietary changes. But, I am happy to have any improvement and wanted to share my story. I will give updates as I reintroduce foods and go off the powder. The cleanse will be over next week.

Good luck!
K

I was diagnosed with MCS/EI and Complex Food Allergies 20 years ago. Long story short, with process of elimination, I found that potato caused congestion in my hands/stiffness etc. Around that time I was aware of a dupuytren's contracture in fifth digit right hand. It hasn't changed(-35) all these years. Recently, I saw a hand specialists, about a swelling in my left wrist that popped up acutely that caused pain and limited motion of 3-4-5 digits. (Incidently, this happened after an MRI of the cervical spine.) The lump, pain and motion on the wrist resolved in a week. He did not have an explanation because it was not a ganglion. But we noticed two cords in this palm with nodules and the beginning of contractures. I was aware of one but thought it was a callous. DAH
In addition, I am having right shoulder pain and doing PT. I noticed this shoulder joint looking swollen. Researching related diseases to dupuytren's tonight, I was amazed to find shoulders and bi cep muscles to be included. I am thinking, what in the world would cause all of this activity in my tendon facia. Your note makes me examine my current exposures to foods or chemicals. Thanks, Sue

Hi Everyone!

Here's an update on my journey with Dupuytren's...

My three-week cleanse ended awhile ago and I slowly re-introduced potential allergens. In the second week of the cleanse, when I was taking the clearvite 3 times a day, was when I noticed my hand feeling better. Or actually noticed that I wasn't feeling any pain or thinking about my hand and the nodules, I could stretch my fingers all the way back, and felt the nodules flattening. I was so encouraged and amazed after being told there was nothing that could be done, short of surgery or radiation therapy.

The foods that I have kept out of my diet are gluten, dairy, and caffeine. My hand doesn't feel as perfect as it was feeling during the full cleanse. I am now trying to discover what part of the cleanse was helping the dupuytren's. My hand still feels a lot better and I can still stretch it back all the way. I do feel a little discomfort at times when I drive or hold certain things. Clearvite is a dietary supplement with enzymes, herbs, and vitamins, so I have found an enzyme supplement, Digest Gold, that includes all of the enzymes in Clearvite and for the last week I have been taking it to see if the enzymes are the key. It seems to be helping, but I can't say for sure. I'm going to continue with the enzymes for a month and see if I really notice a difference. I started with the enzymes because of another post I read about vitalzym. I may try that after the digest gold.

It's possible that it is an allergen as well. I have read about Dupuytren's disease being like an auto-immune response and allergens can trigger that response. So, I also plan on doing the cleanse again after trying the enzymes and re-introducing the foods slowly to see if I have any response in my hand.

This is my process of elimination and I am hopeful that I will find the right combination that will diminish the nodules and prevent them from progressing. I would love to hear about anyone else's story.

Katerina:

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Hello Everyone!

Thank you for the forum and all of the good information that you provide. I am 37 and have 2 nodules on my left hand after suffering from a large cut. I don't have any DC in my family and it was really disturbing, as you all know, to have these bumps growing in my hand and then to be told by 2 hand specialists that there was nothing to be done for it except surgery, eventually.

That's when I ended up here at the forum and other online resources to get all the information I could. Radiation therapy sounded like the best bet since the nodules are still growing. I went to Dr. T at Scripps and was barely a candidate for it, because I wasn't experiencing any real limitations. My nodules were progressing and I experience some pain while driving or trying to flex my hand back. Luckily, I don't have any contracture. But, I was tremendously nervous about it and experiencing pain in certain situations. Radiation therapy was going to cost around $6,400 in San Diego without insurance. A little steep and there was always the chance that it wouldn't progress.

So, where is the good news? I have been doing a cleanse and I'm on my third week with Clearvite (an enzyme-based powder) and my hand has stopped hurting and I'm able to flex my fingers all the way back. I was amazed. The cleanse has had me cut out all wheat, dairy, soy, corn, tomato, caffeine, and alcohol. I don't know if my DC is improving because of the supplement or because of my dietary changes. But, I am happy to have any improvement and wanted to share my story. I will give updates as I reintroduce foods and go off the powder. The cleanse will be over next week.

Good luck!
K

There are proven effective treatments for the symptoms of Duputren's which include various types of hand surgery, X-ray radiation, and injections of an enzyme that dissolves the collagen in the hand. I am not aware of anyone demonstrating the effectiveness of lotions or dietary changes for this disease or similar diseases like cystic fibrosis.

There are associated symptoms such as hand cramping and contractures and nodules and massage and other treatments may provide some relief and are worth the effort and expense but they are only stop gap measures while your disease proceeds at its own pace.

XRT seems to be the most effective for the most people in slowing the progression of the disease. It would be used in conjunction with other treatments to deal more directly with the symptoms.

In terms of relative cost:

XRT $8000 and no time for recovery
Fasciectomy $4000 and 3-12 months for recovery
Xiaflex $4000 and 3-4 weeks for recovery
NA $1100 and 2 days for recovery

The greatest documented risks are associated with a fasciectomy as there is a tourniquet applied and the blood flow to the lower arm and hand is stopped for 90 minutes or longer during the operation.

There is the most experience with the most patients over the longest period of time with fasciectomy, XRT, and NA. Xiaflex is very new and has only been in widespread use for a little more than one year.

I have had XRT and would definitely do so again. I have had NA and Xiaflex procedures done and been happiest with the results from the NA. I personally would never take on the risks associated with a fasciectomy which can lead to permanent disability and however small the risk (about 1 in 20) it is much to high and much to daunting for me to consider, especially when there are two very viable alternatives without this risk.