#51

“not good ideas”

What!!! I thought saying “butt” and “backdoor” in the same sentence would get you banned…

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#52

Based skeptic debooooonker. Unironically. :sunglasses:

I’m… cured… In the rapa dungeon you’ll learn all about it.

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#53

Another Common drug (Metformin) reverses aging in monkeys in potential longevity discovery

Common drug reverses aging in monkeys in potential longevity discovery (msn.com)

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#54

But…but…your avatar is SMOKING :grimacing: :confounded: :face_with_symbols_over_mouth: :japanese_ogre:

#55

Maybe a good thing my 45 minute discussion with a lot of detail and science with Dana didn’t get put out there. What a complete cluster - totally the opposite of what was expected. Yes Agetron - dodged a bullet … and my initial annoyance of having prepared carefully for the interview, having her questions in advance … and not even a mention of anything conveyed. It’s disrespectful and rude. Don’t come and take up someone’s time when you aren’t going to use the content - when it is quality content. Anyway - think I dodged a bullet … but the quality of the end product isn’t what it could have been.

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#56

Welcome!
See previous discussion here as well:

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#57

I took rapamycin for several years at a low dose (2 mg a week) for anti-aging purposes and experienced serious infections that caused permanent damage. In my experience, the potential side effects are often downplayed. I would encourage others to carefully consider the risks before taking this medication.

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#58

Can you please share more details… what other things you were taking at the time, and more details on the exact nature of these infections, and how you measured and identified any permanent damage?

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#59

I began taking Rapamycin about five and a half years ago at a dose of 2 mg once a week, along with metformin and MitoQ (a more advanced form of fisetin). After roughly a year, I increased the dose to 6 mg once a week. Shortly afterward, I developed a severe upper respiratory infection, something I had never experienced before. Fortunately, it resolved without causing permanent damage, and I returned to the 2 mg dose.

Later, while still on Rapamycin, I contracted herpes and experienced an unusually severe outbreak. From what I’ve learned, the intensity of the initial outbreak often dictates the severity of future recurrences, and since then, I have faced frequent, relentless outbreaks. I believe this is due to the immunosuppressive effects of Rapamycin.

A few years later, I intermittently combined dasatinib and quercetin with my 2 mg weekly dose of Rapamycin. Unfortunately, I ended up needing urgent care at the hospital due to a serious infection that caused some necrosis. After discussions with specialists, we concluded that the immunosuppressive effects of these medications were likely responsible. This outcome was unexpected, particularly for someone middle-aged and otherwise healthy.

Based on my experience, I believe there needs to be greater awareness of the potential risks associated with these medications, especially Rapamycin and metformin. For me, these treatments did more harm than good.

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#60

Well, our goal here at the site is to identify all the benefits as well as the downsides to any new potential longevity therapeutic, so I appreciate you sharing this information in the detail you have. I encourage everyone who visits here to do the same.

Perhaps some medical professionals here can jump in and ask relevant questions that might help us understand the likelihood that rapamycin contributed towards the risk of getting these bacterial or viral infections, and their severity. We’ve had other reports here of similar issues: Too many bacterial infections, have to stop, low WBC

While I think its a small minority of users, I do think its a risk and its important for us to figure out ways to measure, mitigate / obviate and counteract (if possible) these risks.

When you got these infections did you typically stop rapamycin or continue taking it?

Did you get any blood tests done before or after the infections, that might reveal any issues; for example were white blood cell counts too low? I remember Dudley Lamming suggesting to us that a good way to track and measure our immune system strength may be via tracking TREGs, but I’ve yet to find an inexpensive way to get this tested.

TREGs (T-cell Regulatory Test) (Test details ), Labcorp TREGs test
Test TREGS on the same day you test Trough Sirolimus levels to see if there is significant disruption to your immune system.

I definitely do think that there are risks with rapamycin (though low) and I think it would be great if, as a group, we can work towards identifying factors that increase or decrease these risks. I’m sure, for example, that infection risks for medical professionals who regularly see sick patients and work in hospital environments, may be at a higher risk than a software engineer who works at home alone most of the time; simply due to exposure risks to potential infection agents.

I saw this post on X / twitter recently and it also surprised me - so I do agree that there are issues that we are still discovering with rapamycin. While we don’t hear of these reports often, its important for us to try to learn about the issues, identify the frequency, and identify ways to lower the risks.

Screen Shot 2024-09-25 at 3.29.27 PM
Screen Shot 2024-09-25 at 3.29.27 PM952×264 27 KB

Source: x.com

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#61

I really encourage people to do blood tests. In my case I was surprised to see that the half life of rapamycin was 82.5h. That might look not too far from the 62h generally cited but because it’s an exponential clearance it means that the rapamicyn is going to accumulate if I take it every week.

I was also taking 6mg per week but, to avoid that accumulation issue, I now take 12mg every other week instead.

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#62

I was surprised by this comment. Did it have any follow up please (I´d check ti myself but Twitter is down on my country)?

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#63

Thank you Matterhorn, you bring valuable feedback. Anyone thinking of starting on rapa needs to be aware of possible risks, and some can be very severe. My takeaway is that if I find myself having persistent infections, or more serious infections, I have to re-evaluate the wisdom of staying on rapa. I’m not going to try to “tough it out”. The other big takeaway, is that polypharmacy is a seriously complicating factor. When I go on rapa (probably this November), I intend to stop various supps, like turmeric/curcumin, and take rapa away from most other meds on that day, and to add others only after 2-3 days (like carotenoids lutein, zeaxanthin, astaxanthin). We have very little data on interactions, and we all have unique health profiles and drug reactions. Caution is advised, and thank you again for your feedback.

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#64

Individuals often fixate on a certain item causing their adverse reaction or outcome. The majority of the time, in my experience, they end up being mistaken, but solidly convinced.
We’d need to know the details on such an individual’s claim, their full medical history, other meds, supplements, and importantly what % of the time were they under mTORC1 inhibition.
For all that we know, this individual could have been taking it daily.
There are adverse reactions to everything, from foods to environmental exposures, supplements and medications. It’s not a reason to have no one take what one person has an adverse reaction to.
I’m yet to have anyone have a significant adverse effect of rapamycin - and hope it stays that way.

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#65

Yes.This is always the challenge with evaluating adverse events…

What (in the myriad number of things in our “environment” (food, supplements, medications, etc.) is causing the given issue. I know its a hard issue, made even more difficult because we have such extremely limited information and just was there is a placebo effect on the “positive” side of things, there is also the false attribution issue or coincidence issue that convinces people that X caused Y.

Maybe if we develop an “Adverse incidence” database for longevity drugs / therapeutics - as well as a positive / benefits incidents reporting mechanism, perhaps we can get a better handle on this - with the type of detail that you might see in a clinical study.

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#66

I continue to be amazed by this story - even as low-key, cautionary and underselling of rapamycin as it was.

I didn’t realize it, but I just found out it was on the front page of The NY Times print edition. Wow - this will, I hope, help move longevity drugs and treatment more into the mainstream.

While I know many people here are disappointed the story was not as enthusiastic as most of us are about the potential for rapamycin to greatly improve people’s healthy lifespans… (and I fully agree with that sentiment) - I’m still glad that everyone here pitched in and share their stories and spoke with the reporter.

There is no question in my mind that the increased attention this type of story brings to field of longevity science will ultimately result in more investment in the field, more people working in the field, and faster progress. With a little luck even a rapamycin / longevity clinical trial might get done. Thank you everyone!

And yes, as you might expect, we’re getting more news media enquiries… so word seems to be spreading even faster now.

NYTimesSept25Rapamycin.pdf (2.6 MB)

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#67

I told my family about rapa and its potential help with neurodegenerative diseases (for some people some of the time). So, my sis in law asked her father’s doc about it for her father who has advanced parkinson’s. The doc refused and said it can make Parkinson’s worse and have negative side effects. So very frustrating when they don’t know that isn’t even true. What side effect for this immobile person are they even worried about. Makes me want to scream!

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#68

The story hit my instagram feed. I scrolled through some of the comments, and WHOA! There are so many unhappy people out there, which is pretty sad (who wants to live longer in this awful world, etc). Many more who seem angry and assume they know the details (only for rich people, etc). I didn’t see one person saying, hmmm, tell me more about this, I’m not convinced… etc.

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#69

Thanks for being willing to be in the article and sharing some of your story with us here. We all have different bodies, and we all can use therapies to help us with health - since many of us here take rapa.

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#70

Thanks for sharing your experience. A young (25yo) friend of mine, who has never used rapa, had the same (also shingles… Regular outbreaks of both for a few years now…). His first outbreak was just after he got his COVID vaccine. He never got COVID on the other hand. By any chance: did your first outbreak happen shortly after a COVID infection or vaccination?

1 Like