Forum for Dupuytren's and Ledderhose

Re: new to forum surgery wating on call to say it's on

spanishbuddha — Sun, 05 Jul 2026 07:38:40 +0000

Hi
The success or otherwise of surgery, especially Dupuytrens, depends on the skill, knowledge and experience of the surgeon. So whilst I can't comment on the specifics of the surgery being done, I do wonder what research or self-advocacy you have done on choosing the surgeon who will treat you. Do you have references and reviews from past patients, and checked the surgeons qualifications, membership and publications, etc. You describe stages 2 and 4; is there no possibility of some contracture reduction for the fingers at stage 2 via a less intrusive treatment, sucs as NA or Xiaflex. As a generality, recovery from hand surgery can take anything from a few weeks to several months, even longer, so patience is required and a good post-op rehab team to help you. Does your surgeon have such a team or recommendation in place? If not don't proceed until you know more about the plans for recovery and rehab to deal with instances of infection, pain, scarring, stiffness, swelling, recurrence, and who will help with physio exercises.

Concerning the pinky I can share from experience on having an amputation of that, if the proposed treatment does not succeed. But let's hope you do get enough improvement so that it is not needed.
Best wishes SB

new to forum surgery wating on call to say it's on

edintology — Sun, 05 Jul 2026 04:04:49 +0000

Hi all,
So I'm due surgery depending on the call to say they are fitting me in so between a day and weeks. Surgery was postponed due to needing to quantify my clotting factors (I'm a heavy bleeder).
Based on the stages on this site left hand pinkie is at stage 4 or worse mostly in the PIP joint.
My right had is easily stage 2 in the middle 2 fingers.
Left had progressed very quickly over 18 months while my right had has progressed slowly over the last 10 years.

For the surgery on left pinky they are going the full open surgery with skin graft expected. They are planning to put a rod / wire down the finger to keep it straight. The rod will be there for 6 weeks and then removed. I have been told once removed I will not be able to bend my finger so will need rehab to learn to operate it again. So far searching the forum I have not read of this as normal. So anyone heard of this method before?

I am aware of the risks to nerves and circulation but at this point I'm willing to lop the little finger off as it catches on everything and I get cramps from the lack of use (I consider adjusting to no little finger as minor). Right hand is the one I worry about long term as again daily activities are getting harder and the 2 middle fingers mean they will be in the way for everything if fully curled in or if amputated that's half my finger function gone on my dominant hand.

10 years in remission

Grayfoxxyz — Mon, 29 Jun 2026 23:09:44 +0000

I don't think much about Dupuytren's these days, but prior to 10 years ago, I had developed nodules in both hands and both feet. I went for radiation therapy with Dr. S in Germany for both hands. Since then, nothing has recurred in my hands and activity in my feet died down. I never developed contractions, but my palms clearly show the disease. I have been in remission for 10 years now. My treatment was in 2016. I cut out supplements that might affect the disease, including Glucosamine and vitamin C. I've also tried to prevent injuries which might reactivate the disease. I'm hoping to continue the streak much longer.

Patients with just knuckle pads (no dupuytren‘s) here?

Eichhorn13 — Sat, 27 Jun 2026 22:41:17 +0000

Hi everyone,

I am 37 years old, male, and developed my first knuckle pad on my right hand in my twenties. Over the last two years, two new knuckle pads have appeared over the PIP joints of two fingers on my other hand. I did not expose my hands to any extreme sports / hobbies.

During this time, I have lost some range of motion, especially when trying to make a fist. I have seen several hand surgeons, and they all advised me to wait and avoid excision, as surgery is generally not recommended for knuckle pads.

Overall, the limitation is manageable for me, but I am very worried about developing Dupuytren’s disease. My doctor told me that he has seen many people with knuckle pads, but almost always together with Dupuytren’s. When I asked him how often knuckle pads are idiopathic — meaning they occur without any associated condition — he could not give me an estimate, as he would have an estimation bias (seeing just dupuytren‘s with knuckle pads).
I read in studies, that approx. 8% of people have knuckle pads, but I rarely find isolated experiences in forums with this disease.

Are there any members here who have had knuckle pads only, without Dupuytren’s disease, for a long time? Is this possible an how is your story?

Thank you :)

Re: Recently Diagnosed - Garrod's Pads

Eichhorn13 — Sat, 27 Jun 2026 15:23:41 +0000

Hi,

I am the same age as you and recently got diagnosed having three knuckle pads, but no dupuytren‘s so far.
Do you maybe have an update on your current situation - did you get a therapy for your knuckle pads and did you develop dupuytren‘s until now?

Thank you and all the best!

Re: RT experts in Portugal

spanishbuddha — Wed, 17 Jun 2026 17:56:47 +0000

Hi again Larissa

I think that Dr Shwarz mentioned above works from Texas, so may not be helpful for you; perhaps Greenytx will confirm. The Essen clinic also seems to have (on DART) declined recent requests for treatment, possibly because of Dr Seegenschmiedt absence. Dr Rivas in Spain and the clinic there has good reviews and seems your closest.

Best wishes SB

Re: RT experts in Portugal

wach — Wed, 17 Jun 2026 17:12:38 +0000

Unfortunately, Prod. Seezenschmiedt is currently ill and can't treat. But he is recovering!
Wolfgang

Re: RT experts in Portugal

Larissa — Wed, 17 Jun 2026 15:00:20 +0000

Thank you both for your feedback. 🙏🏻

I am already "tracking" the development with pictures. And as I see a continuing development - don't know wether that might be triggered by my using my motorbike again every day now in the summer...

But the fact of it being seemingly active made me want to inquire more about RT. I was in touch with Prof. Seegenschmiedt in January, but after an initial feedback from him I couldn't get in touch with him anymore. I hope he is doing well and just has so much other work to do.

This week I went to see an RO here in Faro, but unfortunately, they don't have much experience with Dupuytren so far. I also contacted Dr. Rivas in Spain, whom spanishbuddha already mentioned. I just want to make sure that I don't miss the right point in time for RT, as I know from my hand surgery (undiagnosed scaphoid fracture) how much that affects the hand plus it can trigger another push of the disease - in my case it was the kick-off to it... So I would definitely, want to go for RT first.

I am not on FB anymore so I won't have access to the DART group. Do you happen to know of any website that also provides this information or where I could find information from Dr. Schwarz?🙏🏻

Thank you again for your reply and all the best to both of you. 🍀

Re: RT experts in Portugal

Greenytx — Tue, 16 Jun 2026 19:08:55 +0000

spanishbuddha:
Hi Larissa

It's difficult to answer this objectively. Itching is one symptom the condition is 'active' , in my own experience I also had soreness when pressing on developing nodules, and slight pulling under the skin. If the nodules are recent as far as you know, you could plan for RT in say the next 3 months and keep a close watch to see which way it goes. It might go quiet or show signs that it's continuing to develop with other symptoms. Usually, for most, progression is slow, and this sounds like the case for you. Set up the appointment perhaps and decide closer to the date according to developments or changes? I suspect you will know one way or the other.

Best wishes SB

Hi Larissa -
I agree with Spanishbuddha about this being hard to answer objectively, but I thought I would add my experiences when my condition was "active". I have it in both hands and it is different each hand. My right hand is the worse and most progressive so I am going to talk about that hand. I had fasciectomy surgery on the pointer & middle finger in April of 2024. Surgery was partially successful, but fingers have already contracted again. I have RT therapy in June (basically after most of healing from surgery), the RT is low dose radiation. RT was 5 days in row and was about 90 seconds on each hand. Second round was September 2024.
After saying all this, I wish I had known about RT before I had the surgery in 2024 as I would have gone the RT route. I could and still can tell when it is active by the tingling feeling, itchy, soreness and slight pulling in palm. At times the 3 nodes that I still have will look red and seem inflamed. It sometimes last a week or so, or it comes and goes.
If you haven't already, set up appointment with RT oncologist and you will hopefully get the answers you need. I also took photos of my hand before surgery, after surgery and during healing, as well as before, during and after RT. That was very helpful for my doctor and me.
Also as spanishbuddha mentioned, the DART facebook group is a wonderful source for Radiation Therapy and Dupuytren's. My oncologist, Dr. Schwarz, is one of the doctors that will provide information at times on DART.
Good luck and keep moving forward. This disease is no fun at all!
Cheers

Re: RT experts in Portugal

spanishbuddha — Tue, 16 Jun 2026 17:16:24 +0000

Hi Larissa

It's difficult to answer this objectively. Itching is one symptom the condition is 'active' , in my own experience I also had soreness when pressing on developing nodules, and slight pulling under the skin. If the nodules are recent as far as you know, you could plan for RT in say the next 3 months and keep a close watch to see which way it goes. It might go quiet or show signs that it's continuing to develop with other symptoms. Usually, for most, progression is slow, and this sounds like the case for you. Set up the appointment perhaps and decide closer to the date according to developments or changes? I suspect you will know one way or the other.

Best wishes SB

Re: RT experts in Portugal

Larissa — Tue, 16 Jun 2026 14:35:09 +0000

Hi spanishbuddha -
I hope my message finds you well.
From monitoring the status of my right hand I noticed that the disease might be active again. The hand was itching for a few days and now I feel two more small nodules below my middle finger.
During a live session with Professor Reichert, he said that radiotherapy is most effective when the disease is active, which itchiness would be a sign of. That’s why I wanted to enquire about radiotherapy now.

I’m now wondering how long such ‘activity’ lasts. Do you happen to have any experience with this?

Thank you & kind regards,
Larissa

Re: Theragun percussive therapy device

spanishbuddha — Tue, 26 May 2026 16:43:00 +0000

Hi

People have reported relief, maybe not success, by using various gentle massage techniques, including with some hand massage devices, but afaik not with a percussive device. I would urge caution as the literature reports a DD link between the use of vibration tools, or hand trauma in general. I personally would not risk it based on my own experience of the effects of (mis)using manual tools.

Best wishes SB

Theragun percussive therapy device

hanpat — Tue, 26 May 2026 09:05:54 +0000

Hi,
Has anyone ever used a percussive therapy device, such as a theragun to minimize the effects of the node development that lead to the fingers becoming crooked?
Thanks

Re: Question about pain

StellaS — Sun, 24 May 2026 21:13:32 +0000

Thank you for your response. I have had SFN for 6 years, I am 100% this pain is not due to SFN. Moving my fingers is painful, holding something is painful, the nodules are painful.

I sent a picture of my hand to Dr. Pess in NJ who confirmed the nodule. I am seeing Drs. in person next week.
The acupuncture was 3 weeks ago, I have tried advil, voltaren, nothing works. Verapamil gives me a slight relief.
The fact that I have Ledderhose as well makes it highly likely to develop DD. I know that many people don't have pain early on but I am on the yourger side, which is often linked to pain when the disease is agressive.
What I would like to know if wether the disease will affect all my fingers if I have pain in all my fingers...

Re: Question about pain

spanishbuddha — Sun, 24 May 2026 19:20:43 +0000

Hi Stella

It's not clear from this, and your other posts, if you have been diagnosed by an experienced hand surgeon/specialist as having early stage Dupuytrens, or whether the pain you are experiencing is from DD or some other condition (possibly SFN). Some people do have pain from early stage DD, but it's usually mild, and although you mention nodules, there are other more telling symptoms that would confirm the diagnosis, or provide a differential from other possible causes. May I suggest you could be suffering some after effect of the acupuncture related to SFN or inflammation? I would ask your hand surgeon about (other) possible causes for the non-localised pain, and the options to treat that or the symptom. Examples might be NSAIDS, steroid injection, ice, hand supports (rheumatic compression glove) etc. At this stage I would really not try and second guess the likely rate of DD progression, but as you are doing, try to gather information so that you can use your appointment to ask probing questions.

Best wishes SB

Question about pain

StellaS — Sun, 24 May 2026 17:14:54 +0000

Hi,

I have a hand surgeons and an oncologist appoitment next week.

I am at the beginning of this disease but unfortunatly I feel that I have the agressive version. I was daignosed with Ledderhose in Feb. and a bad session of acupunture with needles in my hand seemed to have triggered DD 3 weeks ago. I have been feeling extremely anxious reading and researching about this disease.

The pain is constant, gets worse when I use my hands and drive.
Nodules are forming in both hands but I also have pain in whole my hands and each fingers. Pain between the thumb and index finger, pain at the base of the thumb, in the palms, under the index and middle finger and nodules below ring and little finger. Sometimes I even get pain in my wrists.

With your experience, having pain in all those areas, do you think it means that I will have all fingers involved with the risk of all of them contracted?

Thank you for your help.

Small fiber neuropathy

StellaS — Fri, 22 May 2026 13:23:59 +0000

Hi everyone,

Does anyone know if having small fiber neuropathy is a contraindication for RT?
I am at the begining of the DD though the extreme pain I have been having in both heands and all my fingers make me feel that it is progressing fast. Do you think that my neuropathy will get worse with RT?

Also, do you know if having so much pain in both hands and all fingers mean that all my fingers are affected by DD?

Colchicine trial

StellaS — Wed, 20 May 2026 23:45:07 +0000

Hi everyone,
I am a new member and I am still trying to get officially diagnosed by a knowleageble doctor (hard to find).
I read a few positive things on the effect of colchicine on DD and I wanted to know if any of you had tried it?

Here are a few links:
https://www.hkcfp.org.hk/Upload/HK_Pract...te_article.html

https://dupuytrens-society.org.uk/treatm...her-treatments/

https://www.linkedin.com/pulse/potential...l-posner-rukuf/

https://pubmed.ncbi.nlm.nih.gov/1568169/

Re: 35y male just diagnosed - reassurance/guidance

Kunal_gaur__ — Thu, 14 May 2026 05:35:49 +0000

I can understand why this feels overwhelming, especially with your family history and having a young child. But the positive thing is you’ve caught it very early, before any real contracture has developed, and treatments/options today are far better than they were decades ago when your grandad dealt with it.

Your plan to monitor it closely, reduce possible triggers, and avoid rushing into radiotherapy without feeling fully comfortable sounds very sensible. Many people with Dupuytren’s progress very slowly, and some never develop severe hand limitation at all. Try not to jump mentally to the worst-case scenario. Staying informed and acting early if things change already puts you in a much stronger position.

Re: 35y male just diagnosed - reassurance/guidance

spanishbuddha — Tue, 12 May 2026 16:38:31 +0000

It's tricky to answer your first question directly as most people seeking help on a forum are having problems associated with ongoing symptoms, progression of contracture or recurrence after treatment. Nonetheless the overall stats remain that the majority of people with nodules, even minor cords, despite having some loss of flexion do not progress to a contracture. In your case it has started at a relatively early age, and so I would be wary and want to keep an eye on it, as indeed you are. But, it happened after an injury, so maybe it will settle now and not flare up again for many years, or just continue to develop slowly. A GP and maybe a surgeon might say wait and see and come back when it's contracted, and most people dislike this response. But the 'wait' part, along with monitoring, is perfectly valid IMHO in most cases because of how slowly it usually progesses (or in cycles).

Catching it early mainly applies to using RT, since the RT treatment hypothesis is based on the disease being in a specific phase of the overall cycle, and this occurs early on, either when it is first noticed, or at the start of a new active cycle. Even then there may be other options such as a steroid shot directly into sore and inflamed nodules, which may calm things down again enough to continue with wait and monitor. RT does not reverse cords so needs be done at the nodule stage with progression, usually accompanied by symptoms or soreness, itching, tingling pins and needles.etc. Early surgical options are not really suitable, unless there is a cord with contracture because the very act of surgery may cause new or further problems (early or immediate recurrence).

I would amend your treatment cascade as follows, but it's only a guide and IANAD:
1 soreness, inflammation, - wait and monitor, and/or steroid shot
2 soreness, nodules, pitting, flexion reduced - wait and monitor, and/or steroid shot, some would suggest radiotherapy
3 further with nodule hardening, early cords, further loss of flexion or signs of contracture - wait and monitor, or radiotherapy
4 moderate progression of contracture - needle aponeurotomy or collagenase (USA)
5 recurrence of moderate contracture - repeat needle aponeurotomy or collagenase (USA)
6 further or advanced progression of contracture - varying options of surgery
but see also this discussion by the pioneer of RT
https://www.dupuytren-online.info/Forum_...1559373063.html
taken from
https://www.dupuytren-online.info/Forum_...1553463816.html

In my own case, I am a 'do something' kind of guy, so at at the 3rd stage in my list I went for radiotherapy.
When it started on the other hand at stages 1 and 2 I again consulted with a view to having radiotherapy (I wanted RT!), but was advised to wait and see, and it was 2 or 3 years later and only with further symptoms that I actually had RT.

Best wishes SB

Edited 05/12/2026 15:41

Re: 35y male just diagnosed - reassurance/guidance

Dunney77 — Tue, 12 May 2026 14:15:08 +0000

spanishbuddha:
Hi again

Alas it's hard to give guidelines on progression as it varies so much from person to person. But for the majority it is a slow developing disease with hardly noticeable changes except over years. Unless there is an injury or surgery and not always on the affected limb. Or you have what is called diathesis which is a case susceptibility to rapid progression.

It's possible your reduced flexion is due to an underlying cord or nodules, maybe you can feel it with the other hand? I have a finger like that and it has remained that way for years, although I have had RT.

Some surgeons are quite against RT, as they are thinking of RT used for in body cancers that leaves damage of fibrous tissue and scarring.

It sounds like you have a plan, monitor progress, get ready for RT if it develops, take care of diet and health, look after the hands and not worry too much. Sounds good to me.

Best SB

Thank you :) I note you post often on the group and provide a lot of support to people, and must also have seen many cases/stories.

Do you often see peoples' cases get worse or is there a chance you may find initial movement on the disease but then it goes silent as such? My mum has had nodules as long as she can remember but never had issues with contractures.

I am also trying to understand why "catching it early" is considered a very good thing for this disease? My GP said it is good but
given the disease often comes back, I am struggling to see why catching it early really does anything? E.g. if you have surgery, which rules you out of future surgery, if it comes back then you have already tried your ace card?

Is there typically a cascading "menu" of treatments as the disease progresses? E.g.
- Nodules / slight loss of hyperextension - do nothing
- Initial commencement of contracture - radiotherapy
- Moderate progression of contracture - needles
- Advanced progression of contracture - surgery?

Re: 35y male just diagnosed - reassurance/guidance

spanishbuddha — Tue, 12 May 2026 12:16:03 +0000

Hi again

Alas it's hard to give guidelines on progression as it varies so much from person to person. But for the majority it is a slow developing disease with hardly noticeable changes except over years. Unless there is an injury or surgery and not always on the affected limb. Or you have what is called diathesis which is a case susceptibility to rapid progression.

It's possible your reduced flexion is due to an underlying cord or nodules, maybe you can feel it with the other hand? I have a finger like that and it has remained that way for years, although I have had RT.

Some surgeons are quite against RT, as they are thinking of RT used for in body cancers that leaves damage of fibrous tissue and scarring.

It sounds like you have a plan, monitor progress, get ready for RT if it develops, take care of diet and health, look after the hands and not worry too much. Sounds good to me.

Best SB

Re: 35y male just diagnosed - reassurance/guidance

Dunney77 — Tue, 12 May 2026 11:58:26 +0000

spanishbuddha:
Hi

Welcome to the forum. There's lots of experience here and on other sites including Facebook that will answer all or most of the questions your early searches have bought up. So, for now I'll just be brief.

It seems that maybe the finger injury preceded the first development of symptoms in your case. This is common, as it often develops after a wrist or hand injury or surgery. However it is usually slow to develop, and in the majority of cases does not lead to a contracture, but 35 is relatively early, but not unknown, to have symptoms. I would start a record,diary,log of symptoms and progression without being overly zealous about it, as it will provide a useful timeline of actual progress, if any, when discussing treatment if that does become necessary.

Down the line there are effective treatments, including as you mention radiotherapy. You may be considered by some to be too young for that, but others younger than you have been treated successfully with radiotherapy. The dilemma is, radiotherapy will 85% or so of the time stop progression, if done when symptoms show active ongoing progression, but often those symptoms and progression stop of their own accord anyway, or occur in cycles. Worries about cancer should be minimal as the dose is low, superficial and applied to an extremity. I have had radiotherapy in both hands 15 years ago or thereabouts, and almost symptom free, but am twice your age. Afaik it remains the case there are no known cases of cancer caused by radiotherapy for DD, and it has been used as a treatment for 30+ years or so, maybe more.

I lift weights, bike, play tennis, garden, modest DIY all with gloves, and baby the hands so exclude plumbing and serious mechanical car repairs.

There's lots more information in the forum and the website, but I am not sure what you mean by Dupuytren's UK, the BDS is your go to if you're in the uk. They have an active FB group.
https://dupuytrens-society.org.uk/

Happy to answer further specific questions here or by PM.

Best wishes SB

Thank you very much!

Yes it is a fine balance on treatment. I have no contracture in the finger (but when lifting finger off table, it raises 2cm lower than the middle finger on my left hand). Would this loss of hyperextension mean I am on my way to contracture, or could it just stop there? Also wondering does contracture always mean that horrible "bending to palm" fixing or could it stop say 30 degrees?

Given no contacture, I am minded to record monthly measurements and get on with my life and see how it progresses (my mum has had nodules all her life but no contraction issues). If any change, minded to then proceed to radiotherapy - however, can the disease move so quickly I "miss the boat"? Would be paying private so treatment could be administered very quickly.

I am seeing two surgeons in next two weeks though for their advice / how they view radiation on future surgeries.

Re: 35y male just diagnosed - reassurance/guidance

spanishbuddha — Tue, 12 May 2026 11:25:18 +0000

Hi

Welcome to the forum. There's lots of experience here and on other sites including Facebook that will answer all or most of the questions your early searches have bought up. So, for now I'll just be brief.

It seems that maybe the finger injury preceded the first development of symptoms in your case. This is common, as it often develops after a wrist or hand injury or surgery. However it is usually slow to develop, and in the majority of cases does not lead to a contracture, but 35 is relatively early, but not unknown, to have symptoms. I would start a record,diary,log of symptoms and progression without being overly zealous about it, as it will provide a useful timeline of actual progress, if any, when discussing treatment if that does become necessary.

Down the line there are effective treatments, including as you mention radiotherapy. You may be considered by some to be too young for that, but others younger than you have been treated successfully with radiotherapy. The dilemma is, radiotherapy will 85% or so of the time stop progression, if done when symptoms show active ongoing progression, but often those symptoms and progression stop of their own accord anyway, or occur in cycles. Worries about cancer should be minimal as the dose is low, superficial and applied to an extremity. I have had radiotherapy in both hands 15 years ago or thereabouts, and almost symptom free, but am twice your age. Afaik it remains the case there are no known cases of cancer caused by radiotherapy for DD, and it has been used as a treatment for 30+ years or so, maybe more.

I lift weights, bike, play tennis, garden, modest DIY all with gloves, and baby the hands so exclude plumbing and serious mechanical car repairs.

There's lots more information in the forum and the website, but I am not sure what you mean by Dupuytren's UK, the BDS is your go to if you're in the uk. They have an active FB group.
https://dupuytrens-society.org.uk/

Happy to answer further specific questions here or by PM.

Best wishes SB

Edited 05/12/2026 10:43

Re: CoQ10 and Dupuytrens

Tobi89 — Tue, 12 May 2026 09:07:20 +0000

I have started Q10 after I got Peyronie's at 31yo. I use 100mg Ubiquinol for 3 years now. In the meantime I have developed Morbus Ledderhose and a 2nd Peyronie's nodule. I think they are unrelated.

My guess is:
Q10 helps patients on statins as statins deplete Q10. This can lead to issues in the wound healing process. So for patients with a deficiency it might make a difference, for other maybe not. But no one will know for sure as there are no clear studies on it.

In the Peyronie's community it is taken regularly, but far from a miracle drug. I use it during active phases of Peyronie's to have a tiny bit feeling of control and that I did something.

35y male just diagnosed - reassurance/guidance

Dunney77 — Tue, 12 May 2026 08:46:23 +0000

Hi all,

I am a 35 year old male who went to visit Dupuytren UK this afternoon.

A background, I lost the tip of my middle finger (right hand) 4 years ago. Around 3 years ago I developed a lump in the palm of my right hand under that middle finger. A smaller, second module has since developed. I also have a knuckle pad middle knuckle of that finger.

I was told I have Dupuytren’s Disease. No contracture yet and all my flexibility measurements were okay other than I have lost 2cm extension in that middle finger (so can still raise it on table test but not as far back as by left middle finger ).

Doctor said there is a chance it may progress, chance it may not, although my risk factors suggest it might - my grandad had the disease quite bad and my mum has it (although no contracture at all).

Doctor - Dupuytren’s UK - suggested radiotherapy to see if we can’t halt progress. Being 35 and having a maternal side history of skin cancers (including pre-malignant moles removed on my own body), I am hesitant to do it.

Just wondering if anyone else has had radiotherapy here and if it worked for them (appreciate it may be it just doesn’t develop naturally). My queries:

- were there bad side effects
- did it help at all
- Is there a risk that doing it might impact the ability to have surgery in the future (e.g. due to thinner skin)
- Is it true that the forms of cancer it may cause later down the line aren’t typically serious skin cancers (e.g. not melanoma)
- Did anyone find it actually hindered their disease and supercharged it? I query the damage being done to the cells in the area.

Studies seem limited and I note radiotherapy isn’t offered in many countries. So want to do my research.

I’ve spiralled a bit mentally as I really fear I will end up like my grandad and lost the use of my hands (although he had it 50-60 years ago and never had any treatment).

Given I have no contracture (in fact, 2.5cm extension), I’m minded to wait and see how this develops as I understand you can have the treatment up until c.10 degree contracture. Also:

- lessen alcohol intake
- Avoid heavy lifting weights (+ wear gloves for light weights). Only found this out today as a risk factor
- Keep monitoring monthly so I can move early and quickly should anything change
- Keep an eye on the other fingers

Any positive words would really help :) I’m hoping it’s just wait and see, but if we need to act there are surgical options. I’m only 35 and just had a little baby, so just a bit gutted i might have a future where I can’t be the dad I want to be with her.

Thanks for reading - any advice / experience would be appreciated.

Re: CoQ10 and Dupuytrens

spanishbuddha — Mon, 11 May 2026 21:38:59 +0000

Greenytx:
spanishbuddha:
Hi Poppy
On the BDS Facebook group for DD and LD there are few, mostly positive, experiences from people who have explored the benefits of taking COQ10. As you say these are mostly anecdotal, self selecting to give positive feedback, and usually without longer term follow up. But anyway it will be interesting to hear about your outcome or views after a few months.
Best wishes SB

@spanishbuddha
What is the BDS Facebook group??

The Facebook group run by the British Dupuytrens Society. It is open to all and has lots of patient interaction and experiences.
https://www.facebook.com/britdupsoc/

Re: CoQ10 and Dupuytrens

Greenytx — Mon, 11 May 2026 17:56:26 +0000

spanishbuddha:
Hi Poppy
On the BDS Facebook group for DD and LD there are few, mostly positive, experiences from people who have explored the benefits of taking COQ10. As you say these are mostly anecdotal, self selecting to give positive feedback, and usually without longer term follow up. But anyway it will be interesting to hear about your outcome or views after a few months.
Best wishes SB

@spanishbuddha
What is the BDS Facebook group??

Re: Anti-Inflammatory Diet and/or No Gluten & Dairy

stinger88 — Mon, 11 May 2026 14:51:35 +0000

Kunal_gaur__:
My uncle has Dupuytren’s too, and while diet didn’t stop progression, he did notice less stiffness after reducing sugar, processed foods, and dairy. No proven cure from diet, but an anti-inflammatory approach seemed to help overall hand comfort.

Thank you!

Re: Anti-Inflammatory Diet and/or No Gluten & Dairy

Kunal_gaur__ — Mon, 11 May 2026 06:38:10 +0000

My uncle has Dupuytren’s too, and while diet didn’t stop progression, he did notice less stiffness after reducing sugar, processed foods, and dairy. No proven cure from diet, but an anti-inflammatory approach seemed to help overall hand comfort.

Re: Dupuytren's Diathesis Patients with Progressive Peyronie's Life Experience

spanishbuddha — Sat, 09 May 2026 16:49:31 +0000

Hi

I can't help directly but want to make sure you know the BDS has quite a bit of info on PD:
https://dupuytrens-society.org.uk/inform...ronies-disease/
https://dupuytrens-society.org.uk/treatment-2/peyronies/
https://dupuytrens-society.org.uk/inform...seful-websites/
https://www.inspire.com/resources/mens-h...ocate-gislason/

Best wishes SB

Dupuytren's Diathesis Patients with Progressive Peyronie's Life Experience

Tobi89 — Sat, 09 May 2026 09:13:26 +0000

Hi Everyone,

I have Morbus Ledderhose (started 36yo) and Peyronie's Disease (started 31yo), Knuckle Pads (started at 17yo). My hands are itchy a bit, but not yet clear sign of nodules or contraction. My father had DD, ML and PD.

Now especially my Peyronie's Disease reactivated with a 2nd nodule after being stable for 5 years. I did not have a clear trauma so I suspect I need to be prepared for lifelong progression.

Therefore, I wanted to ask if there are patients in a similar category that have the disease for multiple years or decades and can give me some life advice especially in regards to Peyronie's Disease.

On Peyronie's Disease patient groups there are strangely not many patients with DD or ML and typically consists of patients with a clear trauma or penile fracture.

As this is a quite personal topic I would be super happy to exchange via direct messages or a video call, etc.

Thank you and kind regards
Tobi

Re: Anti-Inflammatory Diet and/or No Gluten & Dairy

stinger88 — Tue, 28 Apr 2026 18:45:43 +0000

wach:
On this website you can find comments on diets at the end of https://www.dupuytren-online.info/dupuyt...apies-research/ . They agree with your findings that there is no medical evidence for effective diets against Dupuytrens, just anecdotes about this or that diet.

Wolfgang

Thank you. I may just try a low alcohol, high protein, high fiber, low-sugar diet and see if that helps.

Re: Anti-Inflammatory Diet and/or No Gluten & Dairy

wach — Tue, 28 Apr 2026 06:51:32 +0000

On this website you can find comments on diets at the end of https://www.dupuytren-online.info/dupuyt...apies-research/ . They agree with your findings that there is no medical evidence for effective diets against Dupuytrens, just anecdotes about this or that diet.

Wolfgang

Anti-Inflammatory Diet and/or No Gluten & Dairy

stinger88 — Mon, 27 Apr 2026 20:51:43 +0000

Has anyone found success from dietary changes? I've had people tell me that anti-inflammatory diets or removing gluten & dairy will stop Dupuytrens from advancing, but I can't seem to find any real data on it. My doctors have told me there is no correlation, but to be honest, I don't trust that they really know anything. Curious if anyone has found success.

I've had Xioflex injections and surgery. My surgery finger has come all the way back and needs surgery again. If there was a way to stop this with diet, I'd be dumb not to try it.

Thank you.

Re: Just Finished First Course of Radiation at Duke Cancer Center with Dr. Larrier in Durham NC, USA

spanishbuddha — Sat, 18 Apr 2026 20:48:00 +0000

jonthepain:
btw for those who read my RT story from 2018, Mom passed away shortly after those treatments, on Christmas Eve 2018.

Hi again
Thanks again for sharing your Dups RT story. Sorry to hear about your Mom. Also best wishes for the PC recovery (another example that there can be worse things than Dups to worry about) do the physio, be patient, and hopefully at your age you'll overcome the surgery side effects too.
Best wishes SB

Re: Just Finished First Course of Radiation at Duke Cancer Center with Dr. Larrier in Durham NC, USA

jonthepain — Sat, 18 Apr 2026 18:45:34 +0000

btw for those who read my RT story from 2018, Mom passed away shortly after those treatments, on Christmas Eve 2018.

Just Finished First Course of Radiation at Duke Cancer Center with Dr. Larrier in Durham NC, USA

jonthepain — Sat, 18 Apr 2026 18:25:26 +0000

Hey All,

I'm back!

In 2018 I had two courses of one treatment a day for five days, spaced 5 weeks apart, with Dr. Larrier at Duke Cancer Center in Durham NC. This stopped the progression of contracture in my left hand. That journey was documented at https://www.dupuytren-online.info/Forum_...1533846222.html

Now my right hand has developed nodes, cords, and contracture, not just in my ring and middle finger as in my left hand, but in all fingers. It seems to be a particularly fast paced progression of contracture, as in two months time my fingers have contracted to about where my other hand was stopped with radiation therapy back in 2018.

The big difference this time is that I am not concerned. The 2018 treatments worked perfectly, so I contacted Duke and Dr. Larrier as soon as I was diagnosed by my primary doctor. It was great to see Dr. Larrier and her team again.

I just finished my first course of five treatments over five days. My next course starts on June 1.

I would like to say that being in the Radiation Oncology department really puts things in perspective. While obviously I would like to keep the use of my right hand, I am in nowhere near the situation that the vast majority of the patients I see back in the treatment areas are in. Particularly heartbreaking is seeing small children back there. I am truly blessed to have this condition and not what most other patients around me have.

The week before last I had prostate surgery, and am recovering nicely. The treatments at Duke are a breeze in comparison, especially knowing that they were completely effective in stopping the progression of the contracture in my other hand.

As always, Dr. Larrier and the team at Duke are outstanding. They are extremely caring and upbeat. I couldn't ask for a better crew.

DMSO & fenbendazole not Nicotine Oil

rttech — Wed, 08 Apr 2026 00:13:12 +0000

Ok new video from Dr Lee Merritt,
She has incorporated the DMSO with fenbendazole which is meant to remove the contracture and easier to use than nicotine as no overdose risk, I'm also starting with the same.

PRP + ASC

Tobi89 — Fri, 03 Apr 2026 06:22:12 +0000

Being new to Ledderhose Disease and an AI engineer I created a system to check for the most promising therapies that might come.

The most interesting is a study (in nude rats, so no active immune system, which could be achieved by combination with steroids) that showed that specifics stem cells with PRP can be used to turn overactive myofibroblasts into passive fat cells. Much nicer to step on squishy fat than thick collagen scars...:
https://pubmed.ncbi.nlm.nih.gov/37480917/

This is all science, but a case report just showed the positive effect of PRP alone on a patient in Dupuytren's:
https://athenaeumpub.com/wp-content/uplo...a-Injection.pdf

This makes me wonder if it would be sane for me to to try to find a PRP specialist as I am in early phase Ledderhose before doing Radiotherapy, knowing that it is extremely experimental.

As I also have Peyronie's disease I know that PRP was tested in Peyronie's patients with mixed results as a monotherapy. But one thing that appears to be crucial is timing it in early disease states which is something not really accounted for in most studies as Peyronie's is often treated with "wait and see 1-2 years, then treat with surgery or collagenase".

I think it is time to be hopeful that in 10 years some of these regenerative procedures are more widely tested and hopefully available.

Anyone on the forum who tested PRP?

Re: Hyaluronidase Injections - Long Term Recurrence Experience

Tobi89 — Wed, 01 Apr 2026 17:44:31 +0000

Yes, but I hoped to get long term Recurrence experience on this separate forum to get more neutral? responses :). But I will check out the FB Group.

Re: Hyaluronidase Injections - Long Term Recurrence Experience

spanishbuddha — Wed, 01 Apr 2026 16:25:48 +0000

Hi

We have a few threads or posts about the experiences of using Dr Davis' protocol, and in case you have not checked it out one of the more positive ones is here, although it may not answer your specific questions.
https://www.dupuytren-online.info/Forum_...roma-1_335.html

I assume you are also aware that Dr Davis hosts (moderates) a FB group on this?

Best..SB

Hyaluronidase Injections - Long Term Recurrence Experience

Tobi89 — Wed, 01 Apr 2026 10:44:04 +0000

Hi All,

I have seen a couple of posts on positive experience with Hyaluronidase Injections following the protocol of Dr. Davis.

I am currently deciding between watchful waiting, then Hyaluronidase, then RT in case of aggressive Recurrence VS early radiotherapie.

My age is 36 so kind of young for RT. I would like to push the timing for RT as much as possible.

---

For those that had success with hyaluronidase injections: How did it develop over the course of many years? I am mostly interested if the original nodules grew back or if the injection stitch caused scarring on its own. Was it then possible to repeat the treatment?

Thank you for your experiences.

Re: DMSO & Nicotine Oil

spanishbuddha — Tue, 31 Mar 2026 07:24:35 +0000

If you search the forum you can find a few questions and experiences of using DMSO usually with potassium iodide. Care needs to be taken as DMSO transfers whatever's on the skin through to the blood stream. In some cases of using it with SSKI there have been (anecdotal) reports of interference with thyroid function as a result. It most often comes up as a treatment for nail fungus when mixed with various agents, but with dubious results. I have not heard of using it with nicotine before or for DD, but presume there will be a risk of nicotine addiction or intolerance, and related side effects, just like with smoking or vaping nicotine. In any case there are almost no anecdotal reports of success using DMSO/SSKI with Dupuytrens. I personally would not try this but thanks for reporting it anyway.

Re: DMSO & Nicotine Oil

Greenytx — Mon, 30 Mar 2026 21:38:04 +0000

Interesting... I had never heard of DMSO before. Just did quick research and while it seems like it would be good, I read it's not for long term use and my hand is in pain pretty much everyday and some side effects are garlicy breath! Yuck - did you experience that? Secondly, as a former smoker (been over 10 years now) I am thinking doing the nicotine oil would not be good for me. But I am going to ask my doctor about the DMSO.

DMSO & Nicotine Oil

rttech — Mon, 30 Mar 2026 21:20:01 +0000

I'm 76 year old man living in Sydney Australia. I had surgery on my left hand 10 years back and removed the contraction which had the ring finger at 90° to my hand, surgery was successful and hand has returned to normal.
3 Years back I noted growths were commencing on my RH, I work full time and use keyboards for typing and that new growth was going to stop me working. So I commenced to rub DMSO into the area as I already very good results from using DMSO to free up my body from age related changes.
The DMSO on its own appeared to halt the growth from expanding but did not reduce the growth.
Dr Brian Ardis posted work using nicotine patches and I was using them and found it hard to keep the patch on and decided to purchase some nicotine oil from an essential oil vendor and commenced to use DMSO and nicotine oil on another areas not related to Dupuytren's Growth.
I replaced the DMSO only to a mixture of 3 DMSO : 1 Nicotine oil and commenced to rub it in the Dupuytren's Contracture occurring on the right hand.
I applied every 3-4 hrs, Nicotine has a 4 hr life in our body.
2 months later, now, the Dupuytren's Contracture occurring on the right hand is in full remission, my body is removing the growth, (can't feel it) and I can get my hand flat onto the surface when doing push ups, that feeling of the hand flat without the burning as the growth is stretched can only be appreciated by a Dupuytren's Contracture sufferer.
Warnings, very easy to overdose with nicotine, when you over dose you realise nicotine is not a party drug, not fun, not super dangerous, goes in 3-4 hours.
The mixture of 3:1 of DMSO:Nicotine, 4 drops will give an overdose though this disappears a lot as your tolerance builds up and on the hand harder to overdose. When I did it, it was on the back of my head.
Easy to fix, increase the amount of DMSO to 6:1 or 8:1 but I have not tried those ratios,
I'm using 3:1 and that appears to be able to reduce the Dupuytren's Contracture damage back to a non annoying stage in 3-4 months topically applying, I'm not sure what occurs at the end and I'll repost when that occurs, and please remember, this is not medical advice, just what I tried and what occurred

Re: Duputyren NA Experience

Handyman — Tue, 24 Mar 2026 14:55:49 +0000

Practitioner used local anaesthesia injections.

Re: CoQ10 and Dupuytrens

spanishbuddha — Mon, 23 Mar 2026 21:03:16 +0000

Hi Poppy
On the BDS Facebook group for DD and LD there are few, mostly positive, experiences from people who have explored the benefits of taking COQ10. As you say these are mostly anecdotal, self selecting to give positive feedback, and usually without longer term follow up. But anyway it will be interesting to hear about your outcome or views after a few months.
Best wishes SB

Re: Duputyren NA Experience

spanishbuddha — Mon, 23 Mar 2026 20:51:58 +0000

Hi
Thanks for sharing your situation and NA experience. Given questions on other recent and related threads on using local anaesthesia for NA, to be aware of nerve proximity during the procedure, or a more general anaesthetic, can you also say what anaesthetic you had since you have ongoing nerve related symptoms.
Thanks

Duputyren NA Experience

Handyman — Mon, 23 Mar 2026 19:38:40 +0000

FWIW: My NA experience (Dupuytren’s) - left small finger PIP ~35°

Clinical brief (pre-procedure)

Primary issue: Left small finger PIP flexion contracture ~35°, partially correctable; positive tabletop test
Other findings: Palmar cords; left thumb oblique cord
Prior treatment: None (no surgery, no collagenase/Xiaflex)
Goal: Regain extension with a minimally invasive option (NA)
Age: 55

History: My small-finger contracture progressed aggressively over ~18 months prior to treatment.

Why I chose NA vs. Xiaflex vs. surgery
I chose NA based on my read of the tradeoffs: effectiveness (especially for my stage), risk profile, downtime, and cost.

Major-institution hand surgeon consult (U.S.)
Options offered: Xiaflex, open surgery, and (surprisingly) amputation.
NA was not offered in that office.

Xiaflex (collagenase) – what I was told

Risks discussed: including rare but serious issues like tendon injury/rupture (the way it was explained to me was “the tendon could be affected”).
Recovery: days (with bruising/swelling expected).
Estimated cost quoted to me: $14,000–$21,000 (breakdown given: ~$13,400 for Xiaflex + ~$600 for injection procedure; total dependent on billing/coverage).

Open surgery – what I was told

Risks discussed: infection and neurovascular/tendon injury (general surgical risks).
Recovery: weeks with therapy/splinting.
Estimated cost quoted to me: $5,000–$15,000 (again dependent on billing/coverage).
NA practitioners (U.S. and Europe) – what I found

NA (U.S. practitioner)

Risk discussed: low overall; nerve irritation/injury was specifically mentioned (I was told roughly “~0.5% chance,” though exact rates vary by series and definition).
Recovery: 2–3 weeks to settle down, then ongoing remodeling.
Cost: ~$1,500.

NA (Europe practitioner)

Similar risk/benefit framing.
Cost quoted to me: ~€400.

Outcome (my experience)

I chose NA with a U.S. practitioner.
Practitioner used local anaesthesia injections.
Range of motion improved a lot in my little finger and thumb.
I experienced sensory symptoms consistent with nerve irritation/injury in the little finger (numbness/tingling/sharp pain on impact).
At 6 weeks, sensation has improved somewhat, but I still have residual symptoms and expect it may take several additional months to see more significant recovery.

Notes

This is just my experience and the quotes/costs I personally received - pricing and options vary a lot by provider, region, and insurance.

Edited 03/23/2026 19:55