Hello, I am new here. My motivation for starting Rapamycin (one week ago) is to increase autophagy to alleviate my ME/CFS (fatigue, muscle stiffness and pain,etc). I have seen seen some scattered posts of people with Chronic D. and I thought a place where we can exchange info on the other gains (whish should are tangible) other than longevity (which is not tangible would be useful.
Thank you all - in the last 3 days I have learned a lot from you - and I’ll hope to make some contributions, Maxi
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I view my use of rapamycin as a way to extend my healthspan, or at least slow down any potential decline, whether it’s related to my illness or not. I also believe it has helped me avoid cold and flu in the last couple of years, which is especially important when your baseline health is far from optimal. I do feel that I’m improving slowly, but I have no way of knowing if that’s definitely due to rapamycin. My gut tells me it’s playing a role. Have you looked into Alpha-Lipoic Acid (for ME) and Acetyl-L-Carnitine (for CFS)? I would also recommend looking into mitochondrial therapies, such as melatonin and possibly red light therapy, which I have found beneficial for chronic pain.
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Hi and welcome to our site. Yes - we’ve got a number of people here looking at rapamycin for the same reasons as you. Hopefully some of them will jump in and share their experiences so far. You can also see some of the related threads here, in case you missed them earlier (the search feature for these forums is in the upper right corner of the page):
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I honestly don’t know the mechanism, but I do have subtle improvements when I’m on Rapamycin with my 20 year battle with fatigue. My guess is that it’s related to the Rapam improving my Crohn’s symptoms. It is subtle, but it’s most noticeable when I take breaks.
I typically take around 10-12mg/week.
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Thank you very much. I have done lots of research and trials with supplements and off-label meds without real effect. I am hopeful and have conviction in Rapamycin but I just started. For supplements I recommend https://examine.com. They are supplier independent an their summaries are evidence based and cite the studies. Freemium model.
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Hi Maxi,
I have me/CFS from long covid among other diagnosed, but fatigue is my biggest issue.
I’m about to get my Rapamycin prescription from Ageless Rx.
How is your experience going?
I’ve recently had some success with Oxaloacetate, 1k mg first thing in the morning only. I’ve been doing really well for going on a month now. It feels like disability vacation.
Which has me hesitant to begin the Rapamycin but I am hoping that it helps even more.
Cheers
Hello BestKittens,
I just started Rapa 7mg once a week, I am on my 4th week, so far no effect but I think its too early. If you start its important you determine your pik blood levels 2 hrs after intake and on later days. I am still on this process to adjust intake. There is a lot of info on this site.
When you say 1k mg = 1 gr ?
Best, M.
P.S. Where did you get your Oxaloacetate ?
Hi, I learned that there what is to my knowlwdgw the first study on Rapamycin for ME/CFS: Low Dose Rapamycin in ME/CFS, Long-COVID, and Other Infection Associated Chronic Conditions
(ClinicalTrials.gov)
Furthermore in the Healthrising blog things seem to move a lot:
“With the good results from the Phase I trial, Simmaron is using its recent strategic partnership with AgelessRx to move forward with a more extensive Phase II trial”
Simmaron’s Rapamycin ME/CFS Trial Moves Forward: The Goal - FDA Approval - Health Rising
I tried to get more info from Simmaron, without success (no answer). I believe you have connections with AgelessRx so maybe you can get more info. Unfortunately I cannot try to enlist in the trial, as I live in Switzerland, but others here may want to try.
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Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy
Abstract
Background: mTOR activation is associated with chronic inflammation in ME/CFS. Previous studies have shown that sustained mTOR activation can cause chronic muscle fatigue by inhibiting ATG13-mediated autophagy. This highlights the pivotal role of mTOR in the pathogenesis of ME/CFS.
Methods: We conducted a decentralized, uncontrolled trial of rapamycin in 86 patients with ME/CFS to evaluate its safety and efficacy. Low-dose rapamycin (6 mg/week) was administered, and core ME/CFS symptoms were assessed on days 30 (T1), 60 (T2), and 90 (T3). Plasma levels of autophagy metabolites, such as pSer258-ATG13 and BECLIN-1, were measured and correlated with clinical outcomes, specifically MFI.
Results: Rapamycin (6 mg/week) was tolerated without any SAEs. Of the 40 patients, 29 (72.5%) showed strong recovery in PEM, fatigue, and OI, along with improvements in MFI fatigue domains and SF-36 aspects. High levels of BECLIN-1 were detected in T3. Plasma pSer258-ATG13 levels were strongly downregulated at T1. Spearman’s correlation analysis indicated an association between autophagy impairment and reduced activity.
Conclusions: Low-dose rapamycin effectively reduced PEM and other key symptoms in patients with ME/CFS, as measured by BAS, SSS, MFI, and SF-36. Future studies should encompass dose optimization and develop a diagnostic tool to identify responders with mTOR-mediated autophagy
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I think a lot of the ME/CFS trials have too low doses for a lot of people, there may be people who find no effects from a trial but had they increased their dose past 6mg week they might have. I feel at least 8-12mg weekly is needed for CFS, but I understand why trials will want to only use low dose weekly.
Thank you very much. This is indeed the study I was interested in. I have studied the article and copied a few interesting sentences :
" We conducted a decentralized, uncontrolled trial of rapamycin in 86 patients with ME/CFS to evaluate its safety and efficacy………
Of the 40 patients, 29 (72.5%) showed strong recovery in PEM, fatigue, and OI, along with improvements in MFI fatigue domains and SF-36aspects….
These clinical responses were accompanied by the upregulation of BECLIN-1 and suppression of pSer258-ATG13,supporting a mechanistic link between the therapeutic benefit and restoration of autophagy signaling……
ELISA analysis of BECLIN-1: ELISA of BECLIN-1 was performed based on a kit (Cat# ab254511) and by a protocol described in the manufacturer’s protocol……
…. 86 participants were initiated on therapy with low-dose rapamycin. Of these, 70 completed the T1 phase (day 36), 55 completed the T2 phase (day 60), and 46 completed the full 90-day study protocol (T3), as shown in the study flowchart……
Importantly, discontinuation from the study was most commonly attributed to financial barriers as this pilot trial did not cover the cost of the study drug or safety laboratory tests. A secondary reason for discontinuation was a lack of perceived clinical benefit or a clinical decision to initiate a different therapy that may or may not interact with the study protocol. "
Measuring BECLIN-1 seems to be a simple test. This may be of interest noct only for ME/CFS patients using Rapamycin, but also in the case of use for life extension.
There is a discrepancy in the number of patients: 46 completed the study, but only 40 are included in the analysis.
Simmaron is now preparing a second, placebo controlled study with the use also of higher dosis: 20 mg of formulated rapamycin which will mean 10+mg Rapa content.
Interestingly they say also that determination of individual half-lifes will be important :-), a well known topic for us. I will publish some more data on this shortly,
Best, M.
Hi, are you suffering from ME/CFS ?
Your comment leaves me puzzled, to my knowledge Simmaron’s is the first study on this. Have I missed something ? I would very much appreciate your pointing me to further data on the subject.
Simmaron is now preparing a second, placebo controlled study with the use also of higher dosis: 20 mg of formulated rapamycin which will mean 10+mg Rapa content.
Best, M.
Yes it is one of the first clinical trials focused on ME/CFS but what I am saying is that there may be participants that find no benefit in the 6mg weekly dose and determine rapamycin would not help them, but if they tried it at a higher dose then it might have been different. Looking at the many anecdotes of people trying it for themselves (here and on other forums and places like r/cfs) it seems that a dose in the 8-12mg range weekly (some even higher) brings the most benefit.
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See the other post on subject:
I am interested in the anectodal evidence you mention of people using it at higher dosis. Can you please send me a link ?
Here is a nice video on this study:
Again, its a pre-print, so we have to be careful… but 72.5% showing a strong recovery is extraordinary.
Dr. Younger discusses the extremely high attrition rate of the study, which potentially creates a biased result.
Personally, the 6mg/week didn’t quite do it for me… but using 12mg/week seemed to help… and 36mg/week really seemed to help.
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I have been doing 8-12mg weekly so far but am thinking of changing dosing soon.
@hamtaro Your 36mg/week is very high, did you do that continuously every week? The highest I have heard before was 20mg weekly
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I did the 36mg/week by accident; My compounding pharmacy changed the dose per pill without me realizing it.
So I was on 36mg/week for 4 weeks straight, and didn’t know it until a few days ago.
But during that time… I felt really good, and had no idea why. What I might try is 36mg every 12 or 14 days. I’ll see if I can arrange that.
Wont compounded rapamycin have about 30% of the effect generic/brand sirolimus has? iirc from a study that compared generic and compounded rapamycin
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The actual amount I took in compounded form was 45mg. The doctor said it was roughly equivalent to 36mg. I take it with EVOO and sardines.
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