Dupuytren's Contracture - seeking advice from sufferers.

[lowlandtrees]

14 hours ago, Coilte said:

If there is one thing I have learned about DC it is that no two people have the same experience after an operation,  even if their initial problems seem the same.

Having said that, the general opinion is that the longer you delay treatment the more intrusive the operation (if one is recommended) will be. 

Yes...do see a consultant and get an opinion ASAP.

Best of luck in whatever you decide on. 😊

That is not good news. I decided to go to a private consultant.....got an appointment the next day. He was not particularly optimistic but he could not give me a time frame. He described it as being like the head of the Hydra...if you remove a nodule then it will come back twice as big. His advice was leave it alone until it gets in the way and if I do have it treated it will return within two to three years. He also said that stretching would make it worse. My left hand is swollen for some reason....probably too much bass...but this has nothing to do with Dupuytrens. 

The consultation was less than 10 mins and cost £200! Ouch n ooya 

!

[basexperience]

Hello all,

I got my diagnosis this week, one day before I turned 50, which was a bit of a plopper. Right now I don't have anything impeding my playing, but I'm living with a sense of dread as I play most styles, including 2-hand tap.

That being said, reading your posts has offered some hope here. Thanks for sharing your information.

I've done some research and there's a promising line of research on something approaching a cure using existing approved anti-arthritis drugs - https://www.edinburghnews.scotsman.com/health/arthritis-drugs-can-cure-hand-deformity-2910754 - I got in touch with Neal Millar, the fella running the study, and there could be some kind of trial in a year. I've volunteered and he said he'd put my details on file and get in touch if/when.

Meantime, I'm eyeing up potential non-surgical interventions (the idea of having the skin on my hand removed is completely out, that's an ancient approach which doesn't work and isn't worth the risk for the result) - needle aponeurectomy with ultrasound guiding appears to work well to free existing constricting fibres. The collagenase injections appear to be risky if used on the fingers themselves as there's a real risk of accidentally dissolving a tendon, which means big surgery afterwards, but use in the palm is a lot less risky. Again, I'd want it guided by ultrasound to avoid breaking down the wrong collagen.

I guess the only plus to this is I have some time to do some research before anything needs doing. Right now I can still get my hands flat. I have a great consultant too, works out of the Dunedin hospital in Reading.

Thanks again and best wishes to all you guys

Andy W

[lowlandtrees]

3 hours ago, basexperience said:

Hello all,

I got my diagnosis this week, one day before I turned 50, which was a bit of a plopper. Right now I don't have anything impeding my playing, but I'm living with a sense of dread as I play most styles, including 2-hand tap.

That being said, reading your posts has offered some hope here. Thanks for sharing your information.

I've done some research and there's a promising line of research on something approaching a cure using existing approved anti-arthritis drugs - https://www.edinburghnews.scotsman.com/health/arthritis-drugs-can-cure-hand-deformity-2910754 - I got in touch with Neal Millar, the fella running the study, and there could be some kind of trial in a year. I've volunteered and he said he'd put my details on file and get in touch if/when.

Meantime, I'm eyeing up potential non-surgical interventions (the idea of having the skin on my hand removed is completely out, that's an ancient approach which doesn't work and isn't worth the risk for the result) - needle aponeurectomy with ultrasound guiding appears to work well to free existing constricting fibres. The collagenase injections appear to be risky if used on the fingers themselves as there's a real risk of accidentally dissolving a tendon, which means big surgery afterwards, but use in the palm is a lot less risky. Again, I'd want it guided by ultrasound to avoid breaking down the wrong collagen.

I guess the only plus to this is I have some time to do some research before anything needs doing. Right now I can still get my hands flat. I have a great consultant too, works out of the Dunedin hospital in Reading.

Thanks again and best wishes to all you guys

Andy W

I posted this three years ago.  The contractions on my left hand have definitely got worse on the palm but have not yet affected the fingers. I stopped stretching on consultants advice. I practice more than ever without problem. I have since met people who have had dreadful contortions of their fingers. Here’s hoping

[basexperience]

17 hours ago, lowlandtrees said:

I posted this three years ago.  The contractions on my left hand have definitely got worse on the palm but have not yet affected the fingers. I stopped stretching on consultants advice. I practice more than ever without problem. I have since met people who have had dreadful contortions of their fingers. Here’s hoping

What do you make of the research Neal Millar is doing? Would you (as I would) consider collagenase injections and needle aponeurotomy (using a needle to break the fibre strand) before any kind of open would surgery? I think I'd rather have some kind of minimally invasive procedure, with less risk of side effects and fast recovery (a week for these procedures with no limits on using the hand afterwards apart from your own judgement on pain levels).

That research into using anti arthritis drugs as a cure sounds promising. If my condition moves at the same fairly slow pace as yours has, I hope I can get on any study they put together. Good luck to you, hope you can continue as-is for as long as possible.

[chris_b]

1 hour ago, basexperience said:

That research into using anti arthritis drugs as a cure sounds promising.

Using ordinary Turmeric powder, in the form of a drink, seems to have helped reduce the effects of arthritis in several of my joints. If it can do that maybe it can help with DC as well.

[basexperience]

2 hours ago, chris_b said:

Using ordinary Turmeric powder, in the form of a drink, seems to have helped reduce the effects of arthritis in several of my joints. If it can do that maybe it can help with DC as well.

Mate, this is a very cool. idea. I did some digging and cucumin, the "active ingredient" in Turmeric, is pretty good at a number of things, including (it appears, in research on rats, anyway) inhibiting the formation of collagen fibrosis. I'm going to take it for a few weeks and see if the growth rate of the lump in my palm slows (at the moment it's way too quick for my liking). 

Thanks again for this. If anyone is interested - here's a paper on cucumin and its effect on induced pulmonary fibrosis in Rats - https://dupuytrens.org/DupPDFs/2003_Punithavathi.pdf - it looks like it worked there: indeed Cucumin can actually work as well as ibuprofen to reduce inflammation if taken in high enough doses.

Available capsule forms I've found seem to include black pepper and ginger in there to help counteract the digestive system effects of the cucumin - we'll see how that goes.

[mikegatward]

Just wondered if anyone has had any experience of this condition.

My wife has just been diagnosed with the condition and although there’s no bending of the fingers yet, she’s very worried about how it might develop.

Please PM me if you can share any experience of the condition.

Thanks in advance 😊

[Jason Karloff]

Pm sent

[Downunderwonder]

Workmate has that. Nasty stuff. He's due to retire shortly and just had a third corrective surgery since it started taking over one pinky maybe 30 years ago. He lets it get pretty far gone and it's not really that great after this last one. I guess the scarring builds up.

[Max Normal]

I recently developed my first nodule on my left hand under my ring finger, no contraction yet. Apparently 1/3 of cases don't progress to contractions, so here's hoping. There's a clinic that specialises in radiotherapy for early stage, and apparently the chances of arresting further development with the treatment is good. The treatment is £3000.00, which sounds like a lot, but it's still only 1/2 the price of a Wal......  The consultation was done over Zoom and was free.

I was told to watch and wait, and I have to measure the size of the nodule and how much I can lift my finger with my palm flat on the table every month or so and keep a record. Once it shows progression I need to contact the consultant and have the treatment. I think it's going to be several years before we see Neal Millar's treatments become licenced, so this looks like the only viable early stage treatment at the moment. I'd rather not wait and have surgery or collegenase treatments if I can avoid it.