Side Effects of Rapamycin (part 2)

I had gotten a flu shot in Nov of 2022. There has been a discomfort in the upper arm since then and I never had any discomfort in the past from flu shots.

In researching I read where if a shot is too high on the arm it can cause pain but generally goes away in few months. It was down to a mild ache before starting Rapa. After I upped my dose to 6 mg with GFJ the pain has increased and certain movements of the shoulder really hurts. Even stranger is if I press on the arm, it does not hurt but making the certain movements sends a jolt of pain down the upper part of the arm. Going to continue the 6 mg for two more weeks then suspend the rapa for 30 days.

Sounds like you might be getting a frozen shoulder - just a coincidence that it has started developing at the same time as the flu shot. I doubt Rapa will help. You will probably need physiotherapy.
I had this years ago. There was one exercise that did the trick and that was from a standing position arms by my side, keep them straight and slowly raise up out to the side and keep going until pointing straight upwards. 10 reps twice a day - this was the one exercise from my physio sessions that made the difference.

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Thanks for the tip. I will give it a try.

I’ve had shoulder issues also in the past and physiotherapy (even relatively simple exercises that didn’t “seem” like they would do anything - were extremely helpful.

But, there is also evidence that rapamycin would help in this too. Matt Kaeberlein has said in the past that he thought rapamycin cured his frozen shoulder. It had been bothering him for many, many months - but when he started rapamycin it went away within a few weeks and has not come back. N = 1, so take it for what its worth.

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Will note I’ve had easy bruising (only one bruise) at 8 mg, going to revert to 6 mg. I don’t recall any trauma to the area or anything. ~ 1 inch wide and no trauma. Other factors could be intake of ginger, turmeric, garlic, EPA/DHA and glucosamine (not supplements, from diet). No NSAID use. Pretty high Vitamin Bs, C, E and K1/K2 intake from diet. 1000 IU Vitamin D. 10g collagen peptides in bone broth per day. No bleeding disorders from WGS. Could also be Focalin XR but appears to be rare.

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Did the infections burn/itch? I never had herpes labialis before but just got them the first time this week

see Got my first ever herpes labialis / canker sore - #7 by RapAdmin

Just started taking Rapa - 1mg with GFJ - and of course, I got a canker sore. I was planning to keep slowly increasing my dosage until I got a side effect, and sure enough at 1 mg, there are side effects.
Should I back off the GFJ? Keep this level? Or keep increasing until I get something more severe? Thanks for the input.

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I started at 1mg, and slowly increased by 1mg (no GFJ) and all worked well. I did get a canker sore once at around 6mg/week - but it went away, and never happened again. And I’ve continued upwards, and have tested as high as 25mg in a single dose (10mg + GFJ), no issues.

So, given my n of 1 experience, I recommend slower ramp than faster ramp. Starting with GFJ right off at the start seems a little aggressive by my experience… but again, n of 1, so take it for what its worth.

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Thank you. :slight_smile: I will take the advice to heart. The problem is these pills are too darn expensive!

Ah - thats why I like the India options: Buy Rapamycin Online - List of Reliable Pharmacies

At $1/mg for India-sourced rapamycin the cost for my coffee is probably higher per month than my rapamycin cost.

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I’m waiting for my Indian courier to arrive in Hong Kong. They should arrive in 2-4 weeks. Until then, I am using Rapammune from Pfizer at $10 USD/1 mg.

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And the drama continues. The courier said the package never arrived. The pharmacy shipped it to the courier. The shipping company said it was delivered to the courier. The courier is trustworthy so it appears someone intercepted the Rapamycin from the shipping company on behalf of the courier. The courier is investigating. This is starting to sound like a B grade movie… :unamused:

This is what we do to get cheap generic Rapamycin.

Can’t you get Rapamune again? A 1mg rapamune tablet is almost as expensive as a 2 mg tablet, at least here in the Netherlands

I think this illustrates why being a minimalist or, better still, an essentialist is preferable.

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I like the way you think, but in Hong Kong they can only sell 1 mg or 0.5 mg tablets of Rappamune.

Good news. The courier received the shipment.

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Well, I will note my regime is as minimal as it gets (I don’t take a bunch of herbal extracts and I don’t do stuff like GFJ etc and I time things to the point where unwanted drug-drug interactions theoretically are near zero - the rest are mostly monitoring if minor interactions but necessary. I don’t make a shotgun-style approach to gamble on a bunch of potential compounds that don’t have enough evidence) when it comes to getting 2 psychiatric disorders under control (ADHD literally screws me over on 12 healthy years if uncontrolled, and things like omega 3s are clinically significant if you ask any of the best research/professor type psychiatrists) - and trying to follow as close to what those Okinawan centenarians are doing with plausible mechanistic understanding for every single item. If anything comes up while careful monitoring, one can easily switch if they fully understand what’s going on when it comes to relatively minor reversible situations. (Which btw mild thrombocytopenia was reversed - I also am not on rapa temporarily for oral surgery prep)

I will also note that just wait till you need surgery or ICU (not hoping you do) - it gets extraordinarily complex when it comes to say wound healing or nerve stuff - an overly minimalist approach to nutrition (see what your surgeon recs on pre/peri/post op nutrition + immunonutrition - or lack thereof vs PhD/RDs in the best who are most up to date on the research and can prove it) results in much worse outcomes when compared. Not only that, wait till you see the overly “minimal” multivitamin recs some will make without any complex clinical reasoning (note many surgeons and physicians are not familiar with very in depth nutrition, so they just make overly simplistic recs that can be problematic. There are also a lot of charlatans in the nutrition field and way too much misinformation/ideology such that you have to really drill down the research and publication bias directly if you are a pragmatist - which I assure you very physicians have time for - it’s very low on priority but it’s my health) with plenty of perils of overly high amounts of certain vitamins/minerals or not accounting for complex supply chain/manufacturing issues. Two simple illustrations are supplement form alpha-tocopherol vs dietary gamma-tocopherols or supplemental beta-carotene from multivitamins in smokers causing higher mortality in lung cancer. Both in multis - even if the doc/pharmacist thought of going for a USP grade multi to cover manufacturing issues in a very simplistic way.

I always try to aim for “appropriate polypharmacy” when it comes to older adults who have to be on a very complex med schedule - just a huge number of tradeoffs. “Inappropriate deprescribing” is just as perilous.

Overprescribing and “inappropriate polypharmacy” is just as big a problem as underprescribing. Unfortunately, if an older adult is on enough meds because they have to, I often find they can’t easily find a geriatrician available.

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My GF who’se an oncologist when she sees her patients she tells them they can quit their blood pressure medication (unless malignant hypertension of course)
and cholesterol lowering drugs because there’s no point in taking medication meant to slightly reduce the risk of dying from cardiovascular disease in a distant future when they are dead in a few months to years anyway. The same of course would also apply to the elderly, there is no point in prescribing preventive medication when you don’t have life expectancy left. Just enjoy the little time you have left without worrying about taking pills or the side effects that come with them

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I will note that this approach is true if they are definitively palliative/terminal - not much surprise there with a lot of patients seeing an oncologist. There are plenty of older folks who are considered polypharmacy and not even close.

I will also note my dad who used to manage a CAR-T therapy trial had patients (trial participants) who were told to do that by their oncologist - until the trial showed ~90% remission rates and severely messed with the previous oncologist’s Kaplan Meier curve determinations. Not every oncologist is close to aware of all the possible experimental approaches, let alone an accurate prediction of what those approaches may yield. A prediction on what cell based/gene based therapies have a shot often becomes too complex for a human expert-only approach - there’s a reason why the former Genentech CEO went to Calico to get access to cutting-edge computational biochemistry approaches with the best possible tools.

Oncologists also tend to believe in giving up on what they believe is terminal (not everyone of course) and I found if I don’t ask an expert about experimental approaches I’ve already researched well with PhD researchers in the field - I don’t get any options (I appeared to have controlled pathological myopia progression on one eye - something that my ophthalmologist retinal specialist originally was going to conclude the same old “nothing you can do about it” - until I asked about the experimental approaches I was aware of from my computational biochemistry background - including gene therapy). A dangerous approach if one believes off-label or experimental approaches may be warranted when it comes to “uncurable diseases” but doesn’t “speak up” and have someone who cares enough to take a look because they assumed you got it from a “health guru” from Dr.Google if the expert hasn’t heard about it. As soon as I mentioned my research background and credentials, my ophthalmologist took me completely seriously to gather research contacts.

If they stopped their meds based on a single-dimensional approach of presumed death, these participants could have lost their shot at the day when we finally have a much longer healthy lifespan with more evidence at maybe an exponential level. Every year may count for an extra 2 years.

So while it is true most of the time in those terminal situations, in short - it depends. I personally don’t rely too much on overly simplistic heuristics without fully understanding the limitations and really drilling on all the possible limitations. Some people prefer to not look as it’s not a priority or a very low priority to them. I’ve met a few physicians who believe all anti-aging is either a scam or should not be pursued (reasons from Neo- Malthusianism overpopulation to religious).

But this is a very high priority to me. I respect other people’s beliefs in how they want to handle their health, but for my own situation it may be different.

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Lol seems even our posts reflect our tendencies. Mine concise yet effective. Yours verbose and meandering off point… Don’t worry, I jest.

I do however think it’s basic science that you only test one variable at a time. I take creatine since 25 years of experience and supporting research show it improves athletic and cognitive performance. I take rapamycin as it’s the most promising molecule for longevity. Hopefully my case study lasts another 60 years but in the mean time I’m happy with the immediate health benefits…

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TF: What supplements do you take other than intermittent Rapamycin?
MK: I don’t take supplements… though my wife tries to get me to take vitamin D

Amen brother

We’re basically case studies for our children and the next generation. If I’m still healthy and active at 90+ then I can say with reasonable certainty that Rapamycin has been effective. If I’m also taking a dozen other supplements then you simply can’t tease out individual benefits (or impediments). My ‘data’ would be near worthless.

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