Projects supported by the International Dupuytren Society
International Patient Survey (2014/2015)
To better understand the needs of patients suffering from Dupuytren and Ledderhose disease and to assess the perceived effect of available treatments the IDS, in cooperation with the Ledderhose Blog and the Dupuytren Foundation, is surveying patients. Patients from all over the world participated in this online survey on http://eSurv.org?u=DupLed
Results have been published at the International Dupuytren Conference 2015 in Groningen, The Netherlands, http://dupuytrensymposium.com/proceedings_2015.php, and on this website .
Effect of NAC (2007)
In laboratory experiments NAC can slow down growth of Dupuytren cells (Juergen Kopp et al. "N-Acetyl-L-Cysteine abrogates fibrogenic properties of fibroblasts isolated from Dupuytren's disease by blunting TGF-β signalling" J. Cell. Mol. Med. 10 (2006) pp. 157-165, see also our page on NAC therapy. It is unclear to whether the laboratory concentration levels of NAC can be achieved in a real hand and to what extent lower concentrations would be beneficial. As far as we know there are no clinical results available about the effect of NAC on Dupuytren's contracture (Dupuytren disease) or Ledderhose disease in real life. Therefore the IDS, in cooperation with Dr. Charles Eaton of the Florida handcenter, collected reports from Dupuytren patients who are taking NAC or have taken NAC. Here are the results (data collection ended October 2007).
A total of 11 patients participated initially. Three patients stopped taking NAC (brand name e.g. ACC) after less than one month. Below are the reasons for stopping to take NAC:
- one patient because of continuing stomach problems after 1 week of NAC
- one patient because of permanent fatigue
- one patient for private reasons.
8 patients have taken NAC for more than 1 month. Below percentages refer to a total of 8. Please note that a total of 8 doesn't provide very reliable statistics, the percentages are below thus not to be taken for granted. - Of those 8 patients 7 were male, 1 female.
Age: 42 - 60 (average = 51.7)
Stage of disease: all patients suffered from Dupuytrens, 3 (37 %) additionally from Ledderhose, 1 (12 %) also from Peyronie. Most patients had one or more surgeries and/or NA already.
Dose: typically 600 mg NAC/day; 1 patient temporarily takes 1 g /day; 1 patients takes 1.2 g/day.
Application period: 3 - 6 months.
- typically not much change in the first 2-3 months but situation stable
- after 3-5 months 7 (87.5 %) of the patients report that their nodules became somewhat softer
- one patient (12 %) reports that his Ledderhose nodules became softer after 3 months but that his Dupuytren cords kept growing slowly. Another patient reports of a growing cord after 5 months.
- one patient reports after 5 months that his Dupuytren nodule shrank to about 2/3 its initial size. Another patient reports after 3 months that his Dupuytren nodules became "somewhat smaller". A third patient reports after 4 months that a big nodule "softened considerably" and the extension deficit improved by 15-20 deg.
- one patient reports that his grip improved after 4 months.
Taking NAC over 2+ months seems to soften nodules. Nodules seem to grow slower or might, in favorable cases, even shrink to some extent. Cords seem to continue growing but possibly slower. We have no reports what happens when taking NAC is discontinued.
A better controlled clinical research might make sense as next step. Dr. Eaton suggested that taking NAC orally might not be sufficient to achieve high concentration at the tumor itself. Other means of application might be more efficient and worth investigation.
Observed side effects:
One patient reported an initially aching stomach. See also above reasons for stopping to take NAC.
Page last modified: 12/30/2020