I'm about to start rapamycin; looking for dosing advice

#46

Hi, Tilley50! Nice to meet you. As to what brand of NMN I take…well, that’s a very timely question! If you head over to the topic entitled, “Elysium Health and Misleading Marketing & Interpretation of Data,” you’ll find some disappointing info about that company–which is where I’ve been getting my NMN for quite a while, as well as another similar product. Since I already have about a two-month supply of NMN from Elysium, I’m going to finish it out, and then I’ll be looking for a different source. Again, if you check out the aforementioned topic, you’ll see that some of our community members have made suggestions about where to purchase high-quality, reliable, and even less expensive NMN. I haven’t fully researched all the companies mentioned, but I will be making a change in my sourcing. Hope this helps!

One more thing: I don’t necessarily think that Elysium’s NMN is a bad product, it’s just that I don’t really want to question the ethics of a company I’m doing business with. If nothing else, Elysium’s customer service is excellent. Every time I’ve had a question about their products, they’ve been super responsive and helpful.

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#47

Greetings, Rapafriends! I spoke with my clinical pharmacist contact who works in the organ transplant world, and I have a report for you. Spoiler alert: no big surprises here–it’s pretty much what we suspected.

Systemic pururitis (itching) is actually a somewhat unusual rapa side effect in organ transplant patients, occurring in about 10-20% of the transplant population. Systemic purquritis tends to begin several months after transplant and can become severe only in very rare cases–the itching is usually more of an annoyance for the patient, which resolves within a few months. (FYI: in severe cases, the patient is taken off rapa and a different immunosuppressant is prescribed.)

Here is what’s suggested and/or prescribed for the itching:

Topical steroidal creams and oral steroids (OTC strength initially, followed by prescription strength if necessary); humidifiers in the main areas of the home; stress management (they’ve found that deep relaxation/meditation practices have a favorable effect on rapa-induced rashes).

She also cautioned that in some cases, rapa is not the real culprit, and coincidental to rapa use, the patient has unwittingly added something into their daily routine to which they’re allergic. Thus, it’s a good idea to check for food allergies, environmental allergies, etc., that might actually be creating the rash.

End of report. Like I said, we all probably anticipated these answers, but it’s always nice to turn over every stone when investigating rapa use and its potential side effects. I think of our community as front runners and trailblazers, but with a healthy dose of scientific curiosity, coupled with plain old practical sensibility. Onward and upward!

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#48

Hello, Rapa Friends! I hope you’re all doing well.

I began writing to you all back in September–the 24th, to be exact. After receiving some very helpful advice from this community on dosing and dosing schedules, I started my “rapa adventure” by taking 1mg per week, and increasing the doses by 1mg every two weeks, until this past Sunday, I took my first 5mg dose. I’ve been consistently dosing at one-week intervals, although I took one week off to get my final (final?) Covid booster, but otherwise, it’s been a steady climb to the 5mg dose I took two days ago.

To save you from going back in this thread to see my personal stats, I’m copying and pasting from my original post:

I’m a healthy 67-year-old female clinical psychologist, 5’10", 140 pounds. I exercise regularly, drink alcohol occasionally. I just had my annual wellness exam, and my blood panel (plus everything else) looks great. I’m a healthful, knowledgable vegan eater, and along with the usual vitamin supplements, I take NMN and metformin in what would be considered “typical” doses for my size/age.

Back to my story…

I promised to share my rapa journey each week, but after a couple weeks of posting, I decided to stop bothering everyone with my fascinating reports of…basically nothing! Honestly, nothing of interest has happened. And as of today, it’s still nada in terms of adverse side effects, and nada in terms of reportable changes (for better or worse) in my energy levels, sleep quality, etc.

And maybe that’s a good thing. I believe it was our RapAdmin who mentioned somewhere that perhaps healthy people experience fewer dramatic/immediate changes when they first begin a rapa regimen. (I have no major or minor health issues.)

I’m grateful that I’ve been able to tolerate my first 5mg dose. I’m thinking of remaining at this dose/dosing schedule indefinitely, even though Dr. Blagosklonny suggested that we keep increasing our doses until we experience adverse side effects, and then back off. However, in reading the limited studies we have so far, coupled with the anecdotal reports from users in our community, it seems that 5mg, taken once per week, appears to be the dose/dosing schedule that delivers maximum benefits/minimum side effects to the average population. I’m betting that it’s also the safest dose/dosing schedule for someone like me who’s “shooting in the dark” (my doc is supportive, but she knows nothing about this drug) as I attempt to determine my optimal rapa regimen. Of course, I’ll redo my blood tests in another month or so, which should shed some light on my dosing success–or lack thereof.

Thus, my plan is to stick to this regimen of 5mg, once per week–unless anyone has any other suggestions. I’m a newbie, and I’m all ears! I appreciate your listening to my story, boring as it’s been, and I’m very grateful to be a member of this community. I will report again after my blood work, which I’ll probably do in late January, and once again, please chime in if you have any thoughts or suggestions, or if you believe I’m thinking this out all wrong. I respect the wisdom and knowledge of our community! Thanks so much.

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#49

This recent article links canker sores to a malfunctioning immune system, although it also says it’s complicated.

Because the mouth is dirty, white blood cells like to hang out there; Andres Pinto, a professor at the Case Western Reserve University’s school of Dental Medicine, told me that this way, they can react quickly to a potential infection. But sometimes, this surveillance system fails, and the body can actually self-injure. This is thought to be part of what causes typical canker sores, Pinto explained: Immune dysregulation is the “common denominator” behind the ulcers. Inflammation can help the body heal, but too much inflammation can cause the mucosa to break down, which is what we see when we look at the oval-shaped wounds.

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#50

Does this article above suggest canker sores come from an overpowering immune system, not a weakened one? Maybe rapa can have that effect

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#51

A very interesting observation/theory, HigoMe33. I’ll be interested to hear what other people think, since I’m not from this field of study. If rapa doesn’t necessarily create an overpowering immune system, per se, it certainly does create “immune dysregulation,” from my personal understanding. In fact, in as sense, immune dysregulation (in a controlled, deliberate, temporary, intermittent way) is what we’re going for when we take rapa. But again, I’m not from this field, so I probably shouldn’t even be weighing in on this! Thanks for sharing the study.

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#52

@DMD Thanks for your detailed introductory post and welcome to the site. Please do update us with your blood test results when you have them. And of course any changes positive or negative.

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#53

My view is that canker sores etc come from more ROS in the cytosol and fewer WBC.

#54

Do you have any research papers that suggest this?

#55

Not in a direct sense. As you know I have my own theories about cellular metabolism and the reasons why autophagy has the broader effects it has. Although I do have a science degree from Oxford University (Physics, specialising in Atomic, Nuclear and Theoretical - I had a scholarship in Natural Science in 1978) because I am not strictly an “academic” I find journals really sniffy about considering publishing anything from me. Hence I tend to publish things on my blog and do videos.

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#56

Hello, everyone! I haven’t posted for a while, because–and I’m not complaining here–I haven’t really had anything of interest to post! (Yes, I’m very boring as a rapa user, although I’m a very interesting cat burglar. Just kidding.)

However, I think it’s time to report in…as of yesterday, I took my 8th dose of rapa at the dosage/dosing schedule I was aiming for when I began my rapa journey back in September: 5mg/once per week. I worked my way up to this dosage, increasing the dose by 1mg per week. I skipped one week when I got my Covid booster, but otherwise, it’s been a steady climb to my current 5mg dose, with no reportable side effects.

Just so you don’t have to go back and look at my original post, I’ll paste in my personal description here:

I’m a healthy 67-year-old female clinical psychologist, 5’10", 140 pounds. I exercise regularly, drink alcohol occasionally. I just had my annual wellness exam, and my blood panel (plus everything else) looks great. I’m a healthful, knowledgable vegan eater, and along with the usual vitamin supplements, I take NMN and metformin in what would be considered “typical” doses for my size/age.

So, now, after 8 consistent dosages of 5mg, how am I doing? Just fine. In fact, as I mentioned, I don’t have anything to report, side effect-wise–either positive or negative. I’ve been fascinated with so many of our community’s posts, which have, on occasion, left me feeling as if I’m not very perceptive when it comes to reading my own body! I might be one of those people who just goes about her business without really noticing small changes in energy levels, muscle strength, brain fog (or lack thereof), or whatever. All in all, I simply feel great.

Here’s the one thing I can report, and I’m wondering whether anyone else has experienced this, or whether you might have an explanation for it: On the first few days after I take my dose (which is on Sunday afternoons) I MIGHT notice that I’m a bit colder than usual. (Again, I’m not entirely sure, and I may be inventing this feeling.) It’s like I can’t quite get warm for a couple days. It’s that feeling where you want to bundle up in more clothing, even though everyone around you reports feeling perfectly warm. Does anyone relate to this?

As I originally mentioned, it’s been my intention to remain at 5mg, once per week, for the time being. Next, from reading all your posts and articles on this very helpful site, I will probably take a rapa holiday for a month or so, at the one-year mark, and then resume at the former dosage/dosing schedule. Do I seem to be on the right track? If anyone has any other advice, please chime in!

One last thing: I’m thinking of D/C-ing my NMN, since I can’t find any good, verifiable evidence of its efficacy as a life-extender. Again, if anyone has any thoughts on this, I’d be grateful for your advice.

Thanks so much, my beloved Rapa Community, and I will look forward to your comments, suggestions, and–as usual–your much-appreciated support!

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#57

I think you’re going the right way with NMN. I tried it briefly, then just went to Niacin. If you try that…tread lightly and learn about the burn. I worked up to 3-4 grams a day then tapered back down to just a couple. My lipids are less of a problem now.

If they are going to charge that much money (for the NMN) there should be less fog about whether it does anything.

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#59

This has come up before and seems it may be an effect of rapamycin Rapamycin can lower body temperature - Anyone Measure This?

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#60

Thanks so much for replying, Bicep! I appreciate your opinion, which seems to validate what I’m thinking. And thanks for the reminder about the niacin burn! I haven’t taken niacin in quite a while, so I will slowly work my way up to an appropriate dose. I’m too old to pretend I’m blushing! Best wishes.

#61

Thanks for validating my Monday/Tuesday cold hands and feet, mike666! I thought I might be making it up. It’s very interesting that other people have had the same side effect. Best wishes to you and your wife!

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#62

Thanks so much for responding, RapAdmin! As usual, you’re really excellent at pointing me in the right direction with the link you provided. Just read up on it, and I guess I might actually be experiencing a somewhat common side effect. Feeling cold for a couple days doesn’t really bother me–I simply thought it was interesting and that I should report it to our community.

How in the world you keep track of all us chickens and our queries is truly beyond me. You seem to always have the answer at your fingertips. (Perhaps it’s the rapamycin…) Best wishes, and thanks for being our leader.

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#63

There isn’t an official dose as others have mentioned. The typical dose used is 6 mg per week and your doc may reference Dr. Green’s protocol since he appears to have the most clinical experience regarding rapamycin and what labs to consider monitoring, although I’m still scratching my head on a few things he uses.

I avoid grapefruit juice out of an abundance of caution but everyone has different tradeoffs and risk tolerance. The main question has been what dose rapamycin crosses the blood-brain barrier significantly or not - which I’m assuming you already have a very good idea why that matters.

As you may know, if you are vegan, taking metformin, in the long run, puts you at even higher risk of vitamin B12 deficiency - not to mention, older adults generally may require more. Ultimately, if veganism is not a hard value for you, I would consider switching to adding some fatty fish to diet for pragmatic purposes (hard to get available protein where older adults should consider higher amounts). The AHA scientific committee has an official recommendation of >=2 servings of fish (preferably fatty) per week. Creatine, taurine, EPA/DHA, choline, and potentially collagen peptides and beta-alanine (carnosine levels might have some “anti aging”) are just some of the substances in fish/meat/animal derivatives that have significant potential benefits and are incredibly unlikely to cause harm when under the maximum amount of what can be obtained from diet. Highly targeted correction of nutritional deficiencies preferably with USP grade (my definition of a drug is what is beyond what can be obtained from a diet in a subpopulation that show from diet alone has no clear side effects) is what I prefer if eating food directly is not practical. There are instances where vitamin D supplements were tested 2-10x the labeled amount and I do not want to have excessive levels of Vitamin D

I avoid multivitamins personally, as they are not quite the same as food - check out the Cochrane reviews on increased mortality vs vitamin E/multivitamins/beta-carotene, as well as calcium supplement/fortification potentially increasing the risk of CAD as opposed to dietary calcium in a typical food matrix. This is more than enough to be concerned.

NMN may also exacerbate issues with the availability of methyl donors and it may be worse in certain individuals - NMN/NR may have very preliminary risks of increasing the risk of tumor growth in those who have tumors. Not enough data to say for sure, but there are some high-quality anecdotes. Not to mention, NMN storage and manufacturing could be an issue compared to NR.

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#64

Up to 7mg now and still no side effects at all! Planning on increasing to 10mg per week now, instead of stopping at 7mg.

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#65

Could you expand on your aversion to Vitamin D3 supplementation? It seems that since around 50% of the population is deficient, supplementing would be advisable. I’m interested in your opinions.

#66

Bryan Johnson, who is optimizing supplements and behaviors to a next-level, tweeted today:

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