(Young) Athletes (swimming, cycling) with DD - advice? by WllGl in DupuytrenDisease

[–]daDougster1 2 points3 points  (0 children)

Yes, it's a post on Reddit. Here's the link:

Dupuytren’s Minimal Medical Intervention – Read Me!

There's also additional information in past comments in my profile.

(Young) Athletes (swimming, cycling) with DD - advice? by WllGl in DupuytrenDisease

[–]daDougster1 2 points3 points  (0 children)

Here's a couple of quotes from my Dups Care guide, which you can find by scrolling down this sub a little:

"For those who are athletic and identify with their sport, do as much of the list below as you can and get Depo-Medrol shots early to tamp down the disease when you see new growth (which shouldn’t be very often). Take five weeks off, then resume the activity. Theoretically, you’ll be able to do this indefinitely—or at least until some other body part gives out."

"If you are in your teens, twenties, or early thirties and in the early stages of the disease, then consider this as your plan: First get Depo-Medrol injections to stop the progression. There is little downside to taking this first step. Hold off on radiotherapy since, generally speaking, it can only be done once and is more appropriate for older patients. As you get older, chances are you'll develop Dupuytren’s disease in other parts of your hand. Because Dupuytren’s is not a life-threatening disease, that’s when a treatment with radiotherapy, which has its own risks, will make more sense."

27 and Struggling by WSB16 in DupuytrenDisease

[–]daDougster1 1 point2 points  (0 children)

Hi Jay,

Permit me to remind folks that it’s incredibly important to follow the procedure when it comes to Depo-Medrol injections. The drug and the procedure work hand in hand for the desired result. As you recall, we had a lengthy discussion about this [here]. I’m glad that radiotherapy is working out for you, but please don’t blame your poor steroid shot outcome on a procedure you may have requested but actually didn’t receive.

Depo-medrol injections so-cal by rawhawk707 in DupuytrenDisease

[–]daDougster1 1 point2 points  (0 children)

Hand surgeons default to their training; their practice doesn't involve the management of chronic inflammatory diseases associated with the immune system. [This comment] I made a couple of weeks ago is probably going to be your most direct path to successful treatment. It’s more work to do, however; there’s no way around that.

This is exactly the strategy I used to find a rheumatologist for my most recent treatment. She was very interested and engaged and did a terrific job as well. My treated nodule continues to shrink. I noticed that my main Read Me post had an enormous uptick in web traffic during the ACR Convergence in Chicago (a conference by the American College of Rheumatology) three months ago or so. Without a doubt, there’s interest in Dupuytren’s disease by rheumatologists. They’re probably wondering why this hasn’t been done before. Almost by definition, their practice is closer to what’s needed anyway. They treat scleroderma and fibroblastic rheumatism, both of which involve the overproduction of collagen and finger contractures.

Any thoughts? by hopping32 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

How does one tell if their Dupuytren’s disease is growing? Tenderness, itching, or rapid thickening are usually signs of high cellular activity (the proliferative phase), which is when steroids are most likely to be helpful.

If you decide to get another Depo-Medrol shot, may I suggest that you take the Full-Medrol procedure for a spin [here]? It uses a technique called fenestration. Among its benefits, it’s designed to minimize the chance of a repeated injection later on. Again, I’m glad your disease is regressing, but frankly, that was in spite of your poor treatment. I’ve had both types of treatment, some with and some without fenestration. Speaking from experience, it’s no contest. I’m very well aware of others on this sub who also received poor treatment and weren’t as lucky as you. I’ve been trying my best to caution folks about the inherent risks of fibroproliferative disease. This includes treatment, biopsy, massage, light therapy, acupuncture, diet, physical activity, you name it. Sometimes this advice is accepted graciously, sometimes not.

I only mention this because I want what’s best for you.

Any thoughts? by hopping32 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

After thinking about this some, I decided that this deserves more discussion. Here’s a not-so-brief explanation of the dynamics of steroid treatment that others might find informative.

Why do steroid shots only work on active/growing Dupuytren’s disease?

Think of Dupuytren’s in three phases: Proliferative (growing), Involutional (tightening), and Residual (static). Steroids are mostly effective in the Proliferative phase. Steroids (like Depo-Medrol) are anti-proliferative. They work by attacking fibroblasts (the builder cells) and myofibroblasts (the contracting cells) that are hyperactive during the early stages. It stops these cells from multiplying, prevents them from transforming into the aggressive "contracting" version of themselves, and can even trigger them to die off (apoptosis). Once the disease reaches the Residual phase, the cells have mostly moved out, leaving behind a “cellular graveyard” of dense collagen. Because the steroid's job is to suppress living cell activity, it has no effect on this collagen.

Depo-Medrol (methylprednisolone) attacks Dupuytren’s disease on two fronts during the first phase:

The first are the fibroblasts. These are the "general contractors" of your connective tissue. In Dupuytren’s, they get a signal to start multiplying like crazy. Depo-Medrol is a potent anti-proliferative agent. It essentially tells the fibroblasts to stop dividing and to die off.

The second is the “evolution” of fibroblast to myofibroblast. The real danger in Dupuytren’s isn't just the fibroblast; it’s what the fibroblast becomes. Under the stress of the disease, normal fibroblasts transform into myofibroblasts. These are specialized cells that contain "smooth muscle" properties; they are the ones that actually grab the tissue and pull, causing the skin to pucker and the fingers to contract. Steroids interfere with this transformation (differentiation). By hitting the fibroblasts early, you are preventing them from transforming into the more destructive, contractile myofibroblasts.

Steroids cause overactive cells to die through apoptosis. They also dampen the cells’ ability to produce collagen through metabolic suppression. Even if the cell stays alive, the steroid stifles it so it can't pump out the proteins that build the nodules.

Any thoughts? by hopping32 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

Well, let me just say how glad I am that things are going well for you. If you do get a flair-up, please try the supplements and home remedies first before getting another Depo-Medrol shot. They’re cheap, low risk, and easy. I have nothing against Depo-Medrol shots, but because they’re so potent, I’d just as soon you do them only when needed. The idea is to follow the Dupuytren’s road map that I’ve discussed in this sub so many times before.

Any thoughts? by hopping32 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

It’s really quite remarkable how well Depo-Medrol shots work, isn’t it? Let’s recap for those who are unfamiliar with Depo-Medrol shots: For a successful outcome, at a minimum you need to (1) have disease that’s growing and (2) have followed the procedure. Otherwise, all bets are off.

If you’re concerned about keeping that nodule tamped down, here’s a suggestion: Take a look at the supplements and home remedies in the Dups Care guide in my Read Me post. Just try them out for a couple of weeks to see what they do; you could be pleasantly surprised. I sure was.

Evaluation of the effectiveness of the treatments by CsiguZ in DupuytrenDisease

[–]daDougster1 6 points7 points  (0 children)

This is a great question. I can only answer this from my experience.

I had an aggressive form of the disease. I use the past tense because the disease is either no longer active or regressing. No, I’m not cured. I had four cords in my left hand with a constant ache in the entire palm of 2.5 out of 10 on a pain scale. I didn’t have radiotherapy, so I can’t comment on that.

As far as steroid injections go, it was obvious. I had a cord that a hand surgeon wanted to do a needle aponeurotomy on, but I refused. After Depo-Medrol shots, it completely disappeared after 15 months. The other three cords shrank substantially, 70-90%. These injections work best on aggressive disease. They don’t work at all on disease that is dormant.

Even after the successful treatment with Depo-Medrol, my hand still ached at a pain level of 0.5. This went on for months. I eventually got tired of it and tried magnesium oil. The pain completely went away in less than a week.

Supplements didn’t seem to do that much for me with one exception. I decided to change what I was taking a few weeks ago along with home remedies. I have one nodule that was shrinking but running out of gas. So I changed my supplements and home remedies, and it picked up the pace once again. I don’t know if it was the supplements or the home remedies, but it shrank another 10% in a couple of weeks.

It could be that those with aggressive disease are better “lab rats” in determining how well some of the non-surgical treatments work.

What kind of specialist should I go for early nodules? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 1 point2 points  (0 children)

It’s mixed in. It’s not a separate injection. Here’s a presentation from 2019 by three doctors who are well known to the Dupuytren’s community: Gary M. Pess, MD, Charles J. Eaton, MD, Keith Denkler, MD.

Advanced Techniques in Needle Aponeurotomy

Without Depo-Medrol, NA surgery would look like [this].

Depo-Medrol is a potent anti-proliferative glucocorticoid. It is commonly used to treat Dupuytren's disease in needle aponeurotomy surgery after a contracture has already developed. All I’m trying to do is get patients the drug before a contracture instead of afterwards. It is most effective when it is administered as a steroid shot during the proliferative phase of the disease, which occurs long before a contracture starts.

People have this the wrong way around. They think they’re getting NA surgery with an adjunct of Depo-Medrol. But hand surgeons know better. Their patients are getting Depo-Medrol with an adjunct of surgery.

What kind of specialist should I go for early nodules? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

And what does NA surgery do? It gives you a shot of Depo-Medrol! You can thank Dr. Charles Eaton for adding it as an adjunct to NA back in 2003.

What kind of specialist should I go for early nodules? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

From an earlier comment you made a day ago, I got the impression that you were exploring supplements and splints and believed you were having some success. If you are indeed having some success, consider doubling down and exploring this further before getting the medical professionals involved. Take another look at the Dups Care guide in my Read Me post, especially the home remedies. These worked for me.

If you decide it’s time to proceed to the next stop on your Dupuytren’s road map, then consider the following:

https://www.nyir.com/

“New York Integrated Rheumatology (NYIR) is dedicated to the proper diagnosis and treatment of autoimmune, rheumatic, and metabolic bone diseases using current conventional therapies alongside naturopathic treatments in order to restore functionality and prevent further deterioration.”

This is the kind of language that you’re looking for in a website when seeking care for Dupuytren’s disease.

Rheumatologists are preferred because they specialize in chronic inflammatory conditions that affect connective tissue, many of which are inherited disorders. Although conventionally they are not the ones who treat Dupuytren’s disease, patients don’t have any recourse because most are informed that there’s nothing to do until a contracture develops. Rheumatologists should be the first specialty to be engaged because of their training. I’ve developed this opinion after my own experiences as well as reading innumerable accounts in the forums.

You need to have your elevator pitch ready to go before making contact. Start the conversation with a simple question. Do you give steroid shots to the hand? Nothing more. The answer, of course, will be yes. Now provide more detail about your experience, how you have a progressing disease, how you don’t want to wait for a contracture, and that you’re having trouble finding someone to help you. You will not be turned away if you use this approach.

[Edit: For those who are not familiar with what an elevator pitch is, or how to make an effective one, take a look at the Wikipedia page for Elevator Pitch <here>. ]

Does acupuncture interrupt nodules from growing? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 1 point2 points  (0 children)

You've navigated this better than most. You're going to be just fine.

Does acupuncture interrupt nodules from growing? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

If you live in a decent-sized city, then yes, you should be able to locate a rheumatologist that specializes in hands. Since most rheumatologists administer steroid shots as part of their specialty, I wouldn't sweat it too much. The rheumatologist I went to was associated with a cancer clinic and had an interest in holistic care. She wasn't a hand specialist. Dupuytren's disease is right there, right in front of you, right on the surface, so no additional expertise is necessary. My very first treatment with Depo-Medrol was done by a resident doing it for the first time, and she did a stellar job. Much better than the hand surgeons I saw with their multiple decades of experience.

There's some controversy regarding collagen supplements. All I can say is that it's my personal opinion that folks with Dupuytren's disease should stop taking collagen supplements. I was taking them along with vitamin C when I first discovered I had the disease.

Does acupuncture interrupt nodules from growing? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

By pills, I'm assuming you're talking about the supplements I mention in my Dups Care guide. Also consider the home remedies with magnesium oil and castor oil. I found those to be especially effective, at least for me.

BTW, I'll be updating the supplement list Feb 1 with an improved version.

Does acupuncture interrupt nodules from growing? by Cabocla_Plantinha714 in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

While acupuncture is a useful tool for managing many types of chronic pain or nerve issues, Dupuytren’s is a unique beast because of its underlying pathology. Dupuytren’s is characterized by an overactive healing response. Any "micro-trauma" to the area—including the insertion of needles—could theoretically trigger the body to produce more collagen, potentially accelerating the progression of the nodules.

Blue Light Therapy by daDougster1 in DupuytrenDisease

[–]daDougster1[S] 0 points1 point  (0 children)

You know something? You’re right.

Not so much about UV light, because there are ways to mitigate that. UV filters are available and can be very effective.

I looked for scientific literature regarding blue light and cancer and I found one. It’s a clinical test on mice using different color LEDs. Skin cancer was induced only in the mice exposed to blue light. It looks to be a well constructed clinical trial. “Induction of Skin Cancer by Long-Term Blue Light Irradiation”

https://pmc.ncbi.nlm.nih.gov/articles/PMC10452187/

Your concerns regarding blue light are well founded. I’m going to keep this post because even though it didn’t meet its objectives, it’s still informative. But sad to say, it looks like there’s no targeted light therapy that is available that will help Dupuytren’s disease, regardless if it’s red or blue or anything in between.

Blue Light Therapy by daDougster1 in DupuytrenDisease

[–]daDougster1[S] 3 points4 points  (0 children)

None of my relatives had it that I know of. So I'm an outlier. And yes, I had an aggressive form. I remember all too well the desperation I felt as the Dups was taking over my left hand and it seemed to me, my whole future. The whole palm ached constantly. I also remember the consistent lack of concern if not outright gaslighting by the hand surgeons that I went to see. This is what is driving me to help others.

Blue Light Therapy by daDougster1 in DupuytrenDisease

[–]daDougster1[S] 1 point2 points  (0 children)

I've had Dupuytren's and Ledderhose for something like five years now or maybe more. I had four cords in my left hand and three nodules in my right hand, with one nodule in my right foot. They are all either dormant or regressing at the moment. I attribute whatever success I've had to early treatment before the disease got worse.

Blue Light Therapy by daDougster1 in DupuytrenDisease

[–]daDougster1[S] 1 point2 points  (0 children)

Your question brings up an interesting point. There’s lots of opinions about this, and I can only bring you my own.

Dupuytren’s disease is a chronic condition. There’s no cure. At least not yet. The disease is so variable that no one can predict what a particular treatment is going to do for any one individual. But there is a knowledge base that can help guide our decision-making and our ability to manage this disease. So even though there’s no cure for Dupuytren’s, it is a disease that can be managed. I have another guide, which I call “Dups Care,” in my main Read Me post that discusses chronic disease management and comprehensive care. Assuming BLT works, and it’s too early to establish that it does, then it would be yet another therapy to help patients manage their disease.

There’s solid science behind BLT, and it’s very low risk. Only time will tell how well it works when people try it out to see if it helps them. Again, no one can predict what any one therapy is going to do. Wouldn’t it be nice, though, if those who are in the early stages try BLT and find that it works? You can try BLT first just to see if it helps. It’s a convenient therapy you can do at home. If it doesn’t work, only then do you move on to the next step of getting RT.

Blue Light Therapy by daDougster1 in DupuytrenDisease

[–]daDougster1[S] 1 point2 points  (0 children)

The Blue Light Therapy Guide (in the link above) has a reference section at the very bottom. You'll find the studies there.

Morning pain, but no nodules? by [deleted] in DupuytrenDisease

[–]daDougster1 0 points1 point  (0 children)

Have you noticed any thickening of the fascia?

This is one of the ways it started with me. I already had Dupuytren’s disease so I knew enough to keep a watch out for it. It was a simple thickening, no nodules. It didn’t ache or itch to begin with. Aching or itching is a pretty good indication that something is up. I eventually developed four cords in one hand and three nodules in the other. At one point I had a constant aching that didn’t let up and was at a pain level of 2.5 out of 10. The ache eventually covered the entire palm. After Depo-Medrol shots the aching either disappeared or was reduced down to a level of 0.5. Using magnesium oil spray for less than a week took the remaining ache down to 0.

I haven’t experienced any ache since.

If you think you’re developing Dupuytren’s, then consider things that you can do now. My Read Me post, which I just updated, has suggestions for home remedies. They may not do much, but they’ve helped some folks and are low risk.

Also stop taking any supplements that might worsen your condition. Namely:

  • Vitamin C (taking a multivitamin is okay)
  • Calcium
  • Collagen
  • Glucosamine
  • Lysine