Dupuytrens contracture Improved with Rapamycin

#1

Dupuytrens contracture softening. 7 degrees improved MCP extension in 10 days.

Similar effect with 5 day fast.

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#2

I have a relative with severe Dupuytren contractures. Are there any studies suggesting Rapa may help or a role for mTOR in Dupuytrens?

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#3

Only personal experience. I’ll update in a few weeks

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#4

Hi and welcome to the forum. Thanks for posting.

I’ve never heard of Dupuytren’s contracture - so added the wiki reference in your first post (as I suspect most people are like me in this respect).

Please keep us informed on how things go over the next few months with your personal trial.

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#5

I have it, but only in the mildest form; a nodule on the palm of my right hand below the ring finger.
My poor father had a severe case of it; he could only use his thumb and index finger of each hand. He was disallowed military service in WW2 due to it.
His aunt had it, too, so it definitely ran in our family.

#6

Hi Eberkram. I am glad to hear that your Dupuytren’s improved. That’s great news. Could you please give me more information on what you did prior to the improvement?

Did it improve after starting rapamycin? If so, what dose did you take and how long had you been taking it when seeing the improvement? Did the nodules get smaller or did you just experienced reduced contractures and softer nodules?

As far as your mention of a 5 day fast. You mean you experienced similar improvements in the disease after a 5 day fast? If so was that a long lasting improvement or just something you tried recently? Have you tried fasting before? Have you tried shorter fasting without effects on Dupuytren’s in the past? Also mind sharing how old you are?

Please keep us posted on the progress. Thanks.

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#7

Good questions. I’m 67 yo.

I started 5 day fasts 4 years ago. Two a year. With my first one I noticed some softening of the palmar fascia and improved ring finger extension. I’ve always had the ability to hyperextend. -20 degrees. I improved from 0 degrees back to -10. That improvement got my attention. I’m a surgeon. Little things make a big difference.

Over the years the central cord of my palm has become more defined. More nodular in nature and with general tightening of my palmar fascia. I was back to 0 degrees. So not disabled by the standard, but I noticed it in surgery.

I started Rapamycin, 6 mg/week, 5 weeks ago. The softening was not noticed for about 10 days. Subsequently, The central cord has reduced in diameter and the rest of my palm is less tight with 5 finger extension. An ulnar lateral band on my middle finger has also softened. Clearly less tight.

I’m back to -20 degrees on my ring finger.

There have been no other changes in diet, activities, sleep, massage, or surgery schedule.

The two things in common with the fast and rapamycin is mtor inhibition.

I’m curious if there is other evidence of modified fibrotic response with rapamycin. I believe there is but I lack a reference.

There are many clinical situations where a myofibroblast inhibition would be clinically relavent. Maybe there is some senescence involved as well.

I would love to hear others experience and perspective.

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#8

Thanks for the detailed update! The improvements you report are quite remarkable given how hard Dupuytren’s is to treat usually. Back to -20 degrees, that’s a great improvement.

I agree with you on mTOR inhibition being an interesting factor here that is common with fasting and rapamycin treatment. There is certainly some evidence that mTOR activation can cause or exacerbate fibrosis. That makes for a potential connection with Dupuytren’s.

Best of luck and let us know if you see further changes in future.

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#9

I forgot to post this link to a study showing that mTOR activation may increase fibrosis.

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#10

Yes, I also read that mTOR activity is linked to fibrosis.
Cardiac fibrosis is thought to be a driver of atrial fibrillation, which is one reason why I started on Sirolimus.

#11

So I have completed my first round of rapamycin.

One tongue ulcer. Higher than usual RHR at 55 vs 44.

Fascial softening continues diffusely across the entire palm. Nodularity continues to improve.

I seem to be sleeping a bit hot and occasionally sweating some at night.

Update done.

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#12

two week break, almost.
I feel well,
I have lost 4 pounds and have no idea why.
I PRed on my peloton bike yesterday,
The tightness in my Dupuytren’s has increased from the low point, about -10 degrees so a loss of 10 degrees, just a little palmar tightness, Still way better than prior to my first dose. we shall see after my next round.

I wish there were others observing this.

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#13

So much less drama with my experience. Second cycle. I increased my dose to 8mg a week (I weigh 220).

Labs done. All normal. low total cholesterol high Hdl. Insulin mid normal.

Shoulder pain worse, but ongoing long standing problems.

Exercise levels/ capacity increasing with consistent efforts. FTP and PR with peloton increased.

My original post regarding Dupuytren’s is consistent. Each cycle provides noticeable improvements. The tangible measure is that I can forcefully extend all mpj without pain. -25 degrees now. For those not trained, this is better than “normal” now though the palmar cord is still prominent.

To be continued.

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#14

One last thing regarding side effects. I dosed at night. Awake and alert at 2 am to 4 am. That sucked.

Morning dosing only from now on.

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#15

Thanks for all the updates.

Regarding Dupuytren’s. FYI I was recently diagnosed with the beginning stage of Dupuytren’s. I have only one small nodule and no contracture. I was going to try fasting for five days but decided to stop on day four because my blood glucose was getting too low. I can’t say this three and a half day fasting did anything noticeable to my nodule. But then again I only have a small nodule and no contraction. Besides I’m pretty young. I’m 42 years old.

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#16

Fibrotic inflammatory conditions progress over many months to years. Nodules and consolidated cords will likely take months to years to resolve if they even will.

My personal experience so far is gradual softening of the palmar fascia but the cord remains, but may be better. Very slow so it is not yet convincing.

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#17

Update on Dupuytren’s and general effects.

After several cycles interrupted by skin surgery for healing.

I have a few observations

  1. Definitely slow healing of skin surgical wounds. Slow granulation and slower wound contraction. I needed to skip a cycle or two to get them closed.

  2. Heart rate max sustained is steady at a higher rate. 150 vs 144.

  3. Weight loss slow but steady. 1 lb a month.

  4. Dupuytren’s is also a slow progress towards improvement. ROM is stable to improved at -30 degrees now. Almost to 30 year baseline.

  5. Palmar cords are more narrow, less consolidated with the adjacent fascia.

  6. Minor cords are resolved from adjacent digits from middle finger, thumb and little finger.

  7. biking FTP and endurance and strength continue to improve, currently at 267 up from 185, 18 months ago, yet Rapamycin is supposed to reduce muscle mass gain? I can’t explain this other than intense effort and consistency.

  8. Prostate symptoms slowly worsening at night. Labs normal. I would like more feedback on this from others.

Feedback is welcome

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#18

One final thing related to Dupuytren’s. A plantar nodule noted in the past has all but resolved.

Cool really.

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#19

Nice to see your continuing improvement in Dupuytrens. Regarding the prostate symptoms. I have seen reports of a few people having improved prostate symptoms (like reduced need to wake up to pee at night) but don’t recall seeing any reports of negative effects on the prostate. It definitely makes sense that rapamycin would slow down the age-related growth of the prostate, which would be good for prostatic hyperplasia, but I am not aware of any mechanisms by which it would worsen prostate symptoms. I wonder if someone else on this forum has experienced something similar.

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#20

Interesting news on the fibrotic condition of dupuytrens contracture. There is also animal research indicating that a somewhat related pathological fibrotic disorder, Peyronies disease, might be treatable using Rapamycin. See here: Rapamycin Supplementation May Ameliorate Erectile Function in Rats With Streptozotocin-Induced Type 1 Diabetes by Inducing Autophagy and Inhibiting Apoptosis, Endothelial Dysfunction, and Corporal Fibrosis - PubMed and here: New insights into the pathogenesis of Peyronie’s disease: A narrative review - PMC

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