Just to give you guys an update. I have now been taking rapamycin on and off for a while and even gradually increased my dose temporarily to quite a high dose partially to see if it would influence the Dupuytren’s I have, but unfortunately it has had no noticeable effects on either my small loss of hyperextension or the nodule in my affected finger. In fact, in the last several months I appear to have gotten a new small nodule in my metacarpal joint on my pinky after noticing pain there from heavy pulling exercises at the gym. I’m still hoping the rapamycin is helping prevent the progression.
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Ha, that happened to me. Took it in the evening and couldn’t sleep.
Great case study on Dupuytren’s contracture. My is slowly getting worse as well.
It would be amazing if rapamycin at our relatively small dosing could even slow the progression.
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Dupuytren’s update. 18 months or so.
I’ve been taking rapamycin 6 to 10 mg for the last 18 months. I tried briefly at 20 mg every other week, but it settled on the 8 mg a week skipping only if I have a soft tissue injury or dental surgery.
My Dupuytren’s contracture is stable to slightly improved since my initial six weeks of rather dramatic improvement.
Others On this forum have reported minimal improvement, and I suspect this is because of dense chords into the fingers and across the metacarpal joint Where improvement would go unnoticed.
While I had some facial tightening into the fingers, there were no contractions across the MPJ or IP joints. That is to say this was primarily Palmer where there a broader expanse of tissue that may Be recruited to stretch and Alleviate more focused contracture.
I do note that if I skip a weekly dose for whatever reason, the Palmer tightening increases but remains somewhat stretchable. After resuming within two days, I noticed significant improvement in passive and active range of motion.
Very early pitting or indentation on some of the rays has resolved in the palm most notable on my thumb ray.
So far, I have to say this is a win since there’s been Some resolution and certainly no progression, that is contrary to the natural progression of this disease.
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I have this - had 2 involved areas, right hand. One is fully resolved, the other is improved slightly or at least stable. As this typically happens to susceptible individuals with aging - slowing/reversing aging could be theorized to help. My Dad and Sister have this also, a lovely genetic condition.
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One thing I have found as a consequence of what I have done recently is I am more flexible in the sense that I can turn round easily in the drivers seat of a car and then drive in reverse. It strikes me that if cells function more effective these sorts of things can come as a result of cells not producing all the proteins then would ideally produce should be reduced.
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I have done hand surgery many years. Other than surgery or colaginase I know of nothing that works.
This is really revolutionary if it works for early to intermediate groups. Clearly needs a study to evaluate, but if I were developing this and was so inclined, I’d take rapamicin just for this.
When there is a benign treatment that could avoid surgery or worsening disease it deserves a chance.
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Are you attributing this to Rapamycin, and if so, do you think it would work for scar tissue from flexor tendon injury
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N=1 … just don’t know - had this progressing on 2 distal 1/3rd of metacarpal areas for 3-4 years. 6 months into rapa - one fully resolved, the other not progressing at all. It isn’t causation, but also not expected to happen.
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Is it possible for collagen supplementation to worsen the Dupuytrens contracture ? Frankly, in the past I thought the collagen was BS, because it should be fully digested in the stomach. Brad Stanfield made some pretty convincing arguments that the collagen supplementation may be effective for skin improvement, so I started using in the past year. This also when the DC got worse, although I also turned 50 and significantly increased my weight training without using gloves around the same time.
If the collagen supplementation can increase the skin collagen matrix, couldn’t it also increase ligamental collagen and worsen the DC ?
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I’m a hand surgeon and have operated on many many people with dupytren’s contracture. I have it myself, and one of the reasons I started rapamycin 9 months ago was to see if it would improve. I have observed no improvement and in fact mild progression of the disease while taking the rapamycin. I also have osteoarthritis and have experienced progression of the arthritis while taking rapamycin. Of course, I am n= 1, but still I am fairly disappointed in the negative results.
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Hi. Can I ask what your dosing level is, and frequency?
Hi ,
I started at 6 mg weekly but observed a spike in my lipids and switched to 10 mg every other week. I do 3 months on and one month off.
Dan
Thanks for commenting. I too have done many Dupuytren’s resections, so I get it. This disease seems never to spontaneously resolve in my experience and training.
I have extraordinary finger mobility prior to Dupuytren’s active extension on mpj was -45*. Passive -90*.
Over years active ROM dropped to a “normal” 0* and passive -10*. For me very noticeable in surgery. I had palmar involvement only.
About 5 years ago, After a 5 day fast I regained some extension. I thought it weird. Second fast 5 months later the same thing happened. Fast forward to starting rapamycin. ROM returned.
That was the only change in medication. I was on a statin also.
I commented on this in this forum.
I would love to hear others opinions and reflections regarding this topic. I’m 69 yo now.
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8 mg weekly is my current dose.
I have looked for alternative treatments (supplements, drugs etc.) and have only found case reports or anecdotes of things that helped in rare instances (like CoQ10, hyperbaric oxygen therapy and red light therapy) but nothing that has been found to work in a group of people. An exception is gotu kola, but I found a small pilot study that found that it improved dupuytren’s in humans to some extent. Here is the study:
I tried gotu kola months ago and found no effects on my dupuytren’s. I’m now trying another brand, the exact one that was used in the study. One month in and I’m seeing no noticeable effects. Not that I expected anything because reversal is very rare. Although it doesn’t cause any noticeable reversal, it may be worth taking for prevention on the off chance it helps.
Can you please name the brand of gotu kola that they used in the study? I cannot get access to the journal.
I found your posts very interesting. I am a 66 year old 60kg female with dupytrens in both hands. One nodule in left and two in right. Small cords in right pinkie. No contracture. I am interested in trying Rapamycin. What dosage would you recommend to perhaps have some impact on the disease progression. I would also consider fasting (have previously done fasts prior to dupytrens. Do you take Rapamycin during the fast? As a side note, I have been applying DMS0 and have had noticeable improvement in nodule size and elimination of pain during exercise. Do you have any anecdotal evidence of the benefits of DMSO?
A Midwest Doctor recently did a several part series on DMSO on substack. I’ve been using it for years topically and his series convinced me to try it orally for the first time. One teaspoon in a pint or so of water and chug. You can do it a couple times a day. I did it at night before bed and my wife threw a fit when she came to bed because the whole room stank like garlic. No side effects, but really a couple times is not enough for most things on the list. Here’s the first article by him:
I think his articles are pretty optimistic, though I found it interesting that it is a chaperone molecule for folding proteins. Helps with Downs and Prion disease. Not a cure, but big difference.
That’s for internal organs
eye, ear,nose throat and dental
Great story.
I don’t know anything about Dupytrens, but this might be yours.
I only read about 3 of these, but thought somebody might want them some day.
I think that was all of them. I’m dubious, but might try sleeping in another room (kids are gone and we have a few spares) for a couple weeks just to see if I notice anything. I brush teeth with it nightly for over a year and I think it helps circulation (40% for brushing).
Good Luck,
DMSO (which i use as a topical solvent) is quite odd in its effects. I have no idea why it is used often as a control when it is so active.
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They used Centellicum® brand at a dose of 225 mg twice daily. Not many gotu kola products out there contain that brand but you can find some that do. As an example, I’m currently taking 2 pills daily of LEF Arterial protect. Each pill gives me 257 mg of the Centellicum gotu kola.
For a woman your age I would say 5 mg weekly or 10 mg every other week would be a good dose to aim for in general. If you tolerate those doses well and see no effects on the dupuytren’s you could try to temporarily increase the dose more to see if it has any effect (to maybe 7 mg weekly or 14 mg every other week for a few months) but you would have to be extra careful with side effects at these higher doses. In particular I would get blood tests for blood glucose and cholesterol to see if rapamycin increases these parameters.
Fasting is definitely worth a try. I don’t take rapamycin during fasting since I doubt it will add much to the fast because fasting already reduces mTOR a lot. However, there are mixed opinions on this and I can’t claim to be sure rapamycin won’t have an additional effect when fasting. My suggestion is to try both. Try fasting without rapamycin and try to fast for 3 or even 5 days as Eberkram mentioned working for him above. If that has no effects you could try it again later but with rapamycin also.