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Adalimumab (Humira)
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01/16/2025 16:48
wach 

Administrator

01/16/2025 16:48
wach 

Administrator

Re: Adalimumab (Humira)

Just curious: are you the one who tried cryo for Ledderhose many years ago and who at that time moderated the LD group on Yahoo? See picture on https://www.dupuytren-online.info/ledderhose-disease/ .

Wolfgang

01/27/2025 20:33
Frankerze 
01/27/2025 20:33
Frankerze 
Re: Adalimumab (Humira)

Hello,
Can you explain this in more detail, why didn't it work for you, what was the problem?
Thanks
Frank

01/27/2025 20:59
Jdavidadams20241 
01/27/2025 20:59
Jdavidadams20241 
Re: Adalimumab (Humira)

I will answer both questions.

Yahoo - I did moderate a group on yahoo and I was an advocate of Cryo. I had it done 4 different times and it was always very helpful for large modules. Cryo was not a solution, but a treatment that would destroy bigger nodules from the inside. I do not think it stopped them from growing later, which is why I had additional treatments. When I did cryo, there were several people performing it. After several years, I could no longer find anybody to do it and thus basically gave up on that.

I ditched my Yahoo group after getting threats from a group that was promoting a treatment. I visited them and thought the whole thing was 100% fake, and I did not like them taking advantage of people. They were also making fake posts where they would pretend to be patients and talk about how well the solution worked after 3 and six months. I showed that their clinic and the compounding location were within 1 mile of each other, and that they were not disclosing this fact. They went ballistic, and I decided my job was not to police groups taking advantage of others desperate conditions.

Adalimumab - I found a research paper that seems legitimate. I found a doctor that would let me self inject and I did all the rounds that I indicated in my post. It seemed like it was working after the first few injections, and I reported that. I am not saying that it was completely ineffective in my case, or that it does not work. After doing it for several months, I came to the conclusion that it was not helping my condition in any substanitive way. I am just providing information and it should be used only as one person's experiences. I am not trying to give anybody false hope, and I will always be as honest as my understanding allows. With that said, I can be wrong and everybody should research any treatments.

I am currently trying urea cream and salycilic acid for my knuck pads and one larger fibroma to see if that study has merit for me. I am shedding layers of skin, but it is not clear if it will clear up the knuckle pads. I am going to wait for longer term positive results before talking about this trial. Steroids work for my knuckle pads, but there are problems with the frequency and the skin thinning out.

Nothing I had tried to date has been a great solution, but like I said before - I will go down trying stuff as my nature is not to sit and wait. While my surgery on my really bad foot too forever to recover from, I have no regrets because it was so invasive that I was having issues walking. My goal is to find treatments to stop me from ever getting to the point of surgery.

01/28/2025 07:37
wach 

Administrator

01/28/2025 07:37
wach 

Administrator

Re: Adalimumab (Humira)

Hi David,

thank you for your detailed and very interesting response! Based on your comments we will phrase our page on cryo still more carefull.

Are you aware that we surveyed 1,000 LD patients and asked them about their eyperience with various treatments https://www.dupuytren-online.info/patient-survey/ ? Details of that survey have been reported in P. Werker et al. (eds.) "Dupuytren Disease and Related Diseases - The Cutting Edge" (Springer 2017). The Chapter on the LD survey is also available on https://dupuytrens.org/DupPDFs/2017_Schurer.pdf . In that survey radiotherapy https://www.dupuytren-online.info/radiation-therapy/ seems to be the most efficient treatment for LD . Have you ever considered it and, if so, why did you decide against it? Just curious!

Wolfgang

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accidentially   substanitive   subcutaneous   understanding   interesting   knuckle   fibromatosis   patient-survey   nodules   treatment   treatments   improvement   radiation-therapy   surgery   dupuytren-online   inconvenience   Adalimumab   injections   ledderhose-disease   administering