Side Effects of Rapamycin (part 2)

I wonder when you had your last dose before this 14 mg dose? and how much rapa you had then?

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My regular dose has been 8mg each week. My last 8mg dose was 4/11, then I took 14mg on 4/30

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You possibly should have done 10mg, then 12mg before shooting straight for 14mg.

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You are correct! I had planned to take 12, but Claude said 12 would be ideal and 14 would be acceptable, so I just did it knowing anything negative would be short lived.

The symptoms, if related, and I think they probably were, only lasted a few days. All gone now. The positive feelings I had were phenomenal. I still feel pretty good but just not as OTT energetic.

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I swapped from every 2 weeks back to every week and now I have a fever and infection of some kind in my mouth.

Might be a coincidence but I think not. I suppose my body cannot reliably handle once a week rapamycin.

I kept seeing promising evidence that once a week rapamycin isn’t immunosuppressive but I do have autoimmune conditions that likely put me in a different category.

I think if you notice this happening to yourself then look at increasing the frequency between doses, or even eliminating it entirely possibly. I don’t think getting infections all the time is conducive to longevity!

Once every 2-4 weeks at 1-3mg is probably safe for me with very low risk.

I went to GP who gave me antibiotic but it’s not doing a whole lot. I’m looking to go to dentist or hospital and get a proper swab test done to figure out what is going on.

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Interesting and counterintuitive. Rapamycin is supposed to enhance oral health, through two mechanisms: affecting the oral microbiome and bone remodeling. If so - and there are of course the famous mice trials as well as personal anecdotes from people including on this site - then perhaps whatever infection you have in your oral cavity is less likely to be driven by the classic periodontitis or gingevitis pathogens. You might have something different going on. Also, if you have autoimmune conditions, classically rapamycin tends to alleviate those by tamping down on overactvie inflammatory response - in that scenario one would hypothesize that more frequent dosing ought to have a more positive impact. But as your experience shows, we are all individuals and have specific profiles. Hope you recover soon and you find a dosing protocol that works for you!

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Like I said it might be a coincidence. It could be so many things. It could complete chance.

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@AustraliaLongevity Is the infection a flat white circular ulcer on your gum or buccal mucosa? if so it may be a common side effect of rapa called an aphthous ulcer. It won’t get better with antibiotics.It will resolve on it’s own. About 20% of people get them with rapa.

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The point about infections is that it takes some time to clear them. During that period you want negligible rapa.

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I’ve had that. This is that x20 plus more. Might not be rapa though. I’ve been overworked lately

I have found that 2mg/wk of Rapa has cleared my myalgia to Repatha. Literally has saved my life. My question. Is there anyone who is on Rapa unable to handle the statin myalgia? It is not clear from the many many comments who has myalgia and who has found Rapa has cleared the myalgia. Or maybe everyone on Rapa didn’t realize that it was the Rapa that allowed them to tolerate statins? Just curious. I will test statins next month with 2mg of Rapa.

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I’d argue the acidic gfj irritated an existing sub-noticable sore (from previous rapa), w/out any enzymatic effect.

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I get utter exhaustion the day after 2-3 mg. Usually take at 5-6pm Friday and Saturday will be a write of , Sunday mostly as well. My friend who is a PA said maybe I need the rest but it’s made it so I’m a little afraid of the downtime.

Is 1 mg weekly enough to do much of anything? 190lbs. Maybe 1 mg every 5 days. Douse the exhaustion fatigue get better as yo get used to it. Maybe I need a 50-75mg Modafinal to offset the fatigue Thought on fatigue?

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I too get hit with the fatigue on Sundays the day after taking Rapa. But it’s a nice fatigue and I think I actually do need the rest. Mondays I feel amazing.

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Interesting people report fatigue. Rapamycin tends to give me all day energy when I take it. Unfortunately due to generally feeling great the day i take it, I took 6mg the morning I left on an international flight. Admittedly, I felt fine that morning but was likely run down as 3 days prior I did a 4hr endurance challenge to exhaustion and hadn’t slept well the last couple of nights. ~24hrs after the Rapa I fell ill with high fevers, headaches, sweats, and extreme weakness. I was non-functional ~48hrs until the fevers and sweats broke. I assume a viral illness but no respiratory symptoms to make that more plausible. For the severity of the illness I feel I bounced back reasonably quick but was definitely concerned about getting that sick in proximity to my Rapa dosing. I haven’t tested blood levels on 6mg Rapa yet but my 24hr level at 4mg is undetectable so I don’t suspect the dose was too high.

I think it is best to avoid crowds just after taking it. Hence the risk of infection on a flight is very high as the air tends to be circulated.

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I think your advice is sound but my timeline doesn’t match with a virus from the plane. I went to bed on the plane and woke up sick 8hrs later. That’s too rapid of an incubation time. I suspect I was infected prior to taking the Rapa but then unfortunately timed it so that peak infection and peak drug level were simultaneous. Hard to know whether Rapa helped or hurt. I do feel I recovered quickly but peak illness was miserable.

I would still avoid crowds for a while after taking it and possibly for a short while beforehand. It depends how much and how good your immune system is ordinarily.

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An aside from topic…Is Repatha a Statin? Perhaps I’m not understanding your example in this instance. I was under the impression that Repatha was a PCSK9 inhibitor. Statin myalgia can be a controversial thing, at least according to my last cardiologist who thought it might be attributed to my imagination. He’s wrong, of course.

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yes - Repatha is a PCSK9 inhibitor.

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