New to taking rapamycin. Started 1 mg a week, then took 2 mg and had 1 small canker, went away quickly. Then next week dosed at 4 mg and had several cankers leading me to delay dose at day 7. Took 3mg at day 9 and had had multiple painful cankers that affected my ability to eat and brush my teeh. Using Sensodyne, no SLS. Used OTC Kanka and had Rx for topical clobetasol gel (steroid) to apply with a gauze pad. I am now at 14 days and my cankers are finally gone. Not sure what I will try next. 2 mg a week? Frustrated by my bad cankers. For reference I am 125 lbs and 59 years old.
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Thats a pretty low weight - the average weight for males here is probably around 160 to 190lbs.
You may want to keep it lower for longer (e.g. 1mg or 2mg for a month or two) and only slowly go up by 1mg every few weeks. What is the Rapamycin Dose / Dosage for Anti-Aging or Longevity?
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I agree but also try Lysine and vitamin C. I am just about done with Robbin’s book about copper and Iron and it turns out you really should use like Acerola Cherry vitamin C. Something derived from plants.
Just an idea, take what you want and leave the rest.
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I am having fatigue as well does this tend to ease?
@pmoskie I’m about 120 lbs and have pre-existing autoimmune disease. I’m experimenting with Rapa to see if it can act as a immunomodulator so I can stop methotrexate and escape its unpleasant side effects. My first round (over a year ago) started with 2 mg, the following week 4 mg, then 6 mg and my side effects were extreme thirst, and a strange wired feeling/nervous energy, increased insomnia. I took 6 mg for a couple of months and did a washout as I left for a long trip and it was a convenient time to do so.
A few months later I restarted at 1 mg per day x 5 days a week - based on some comments in this forum linked to papers re a dosage protocol being studied for autoimmune disease. I immediately got canker sores! None at the higher weekly doses btw. I used a strong salt water rinse and they subsided.
I took another long break to trial colchicine (which is contraindicated with rapa) for my autoimmune disease. Trial over, restarted rapa 5 weeks ago: 2 mg, 3 mg, and now 4 mg per week which I’ll remain at. No canker sores, no unpleasant side effects, but no improvements either. It’s all a WAG and there are no answers, not yet anyway. 
I stop most supplements for at least a month when I try new protocols and track my BP, watch my Oura feedback, note my energy levels and joint pain to not muddy the waters of the rapa experience. I’m about to try GlyNac and will report on that in a few months after blood work. Good luck!
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I was experiencing an intensely itchy rash on the tops of both shoulders and on my right knee, and occasionally on the back of my neck, from the sirolimus dosed at anywhere between 2-6 mg/wk - it did not matter. This went on for my first 2.5 months of use. After a lot of research and reading about sirolimus inflammatory syndrome and pruitis sometimes experienced by transplant patients taking daily sirolimus, I got the impression that could be cytokine imbalance, which triggered me to think about a supplement I’d been taking for the last year called Cytokine Suppress by Life Extension. It contains EGCG and Vitexin/Isovitexin. I stopped that supplement a week ago, the rash has disappeared and not returned. If anyone else is experiencing a rash and takes those things, try eliminating them and see if that helps.
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I think it’s possible that the pleiotropic benefits of several drugs, metformin, acarbose, SGLT2-inhibitors, GLP-1 agonists, could have important effects on the microbiome.
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I spoke too soon and have to take it back about that supplement together with sirolimus triggering my rash. I’ve been off the supplement for a week and a half and though my symptoms initially subsided, my itchy shoulder and knee rash came back last night and today, 5 days after taking my weekly sirolimus dosage. Last time, it also got worse the day after my sirolimus dose. It may have to do with a cytokine imbalance triggered by the changing levels of sirolimus, but it wasn’t that supplement.
There is some literature out there about sirolimus-induced pruritis and how it’s associated with increased thymus and activation-regulated chemokine (TARC) levels and eosinophils, and other literature about how sirolimus affects keratinocytes (skin cells that are part of the immune system), which produces TARC. In some instances, topical corticosteroids and antihistimates (H1 and H2 blockers) were effective. A topical corticosteroid didn’t do it for me. I took a claritin and famotidine earlier today (as I also did a week and a half ago, with zyrtec and melatonin at night) and think it might feel a bit better. I will have to experiment.
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My only side effects from rapamycin is smelly farts. I fixed that by taking active charcoal pills.
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Maybe those gassy emissions are the toxic waste being released from cells. Hmmmm?
Activated Charcoal… a good solution.
Just realized this myself on my last rapamycin dosing a few days ago. Using Activated Charcoal now after meals post rapamycin.
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Have never had experience with Rapa affecting flatulence (14 years on Rapa). Most likely it’s a bad diet or taking food in the wrong order, or eating foods that shouldn’t be combined in the same meal, like meat and pasta/grains/starch.
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Maybe together with the acarbose and metformin it does something together.
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I take low dose Acarbose, 25 mg, 1-2 times a day, but don’t take Metformin. May be it’s a combination of both that affects you. Acarbose doesn’t give me any side effects, may be because I don’t eat bread (wheat).
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I do love my bread and rice. Hence probably why. I’ve to tighten my diet. Or have them on day 5 to 7 only.
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I recently started taking Rapamycin and had unexpected side effects: after the 3rd dose (only 2mg) I was knocked out with 38,5°C of fever for a whole day.
But step by step: I am 44 years old, male, 171m, 62kg, fit and healthy.
I am taking Rapamune (Pfizer). No other supplements on the day of Rapamycin. Am taking it on empty stomach in the morning, only with a glass of water.
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- 1st dose 1mg, made me feel extremely exhausted for almost 4 days.
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- 2nd dose one week later, again 1mg: this time I was fine, only slightly down on the first day
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- 3rd dose one week later: 2mg. Diarrhea one hour after taking it. 3hours after taking it I got a fever (38,5°C) and was knocked out in bed the whole day. Weird feeling in the mouth and a discoloration of my tongue: greyish-green. Today is the second day of my 3rd dose and the fever is gone, but I still feel very exhausted. No other side effects.
I would very grateful for any ideas of what may be going on here, since I seem to be pretty alone with this strong reaction despite careful dosing.
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I am not an expert or a doctor but here’s my advice: don’t be in a rush to maximize the benefit rapamycin. You have time.
If you are exhausted for 4 days after a dose then 7 days seems too soon for another dose until rapa doesn’t beat you down so much. If you feel terrible after taking Rapa make sure it is fully out of your body before the next dose; accumulation is not good.
Good luck
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I’d stop taking rapamycin, see the doc in person, and run a few tests. Clearly your body is very sensitive to rapamycin. Also rapa induced fever is a possibility, it just probably doesn’t happen often with such a low dose in once a week application.
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Sorry you are having problems. Your symptoms are puzzling. You could be allergic to rapamycin just as some people are allergic to some microorganisms. Fever isn’t one of the side effects that I can find listed.
“Common allergic symptoms reported with rapamycin include rash, itching, swelling, and difficulty breathing.”
Most common side effects; “feeling tired, weak, or lacking energy while taking rapamycin. Skin rash or acne: Rapamycin can cause skin rashes, acne, or other dermatological issues in some patients. Nausea, diarrhea, or abdominal pain: Gastrointestinal side effects like nausea, vomiting, diarrhea, and abdominal pain are common with rapamycin use. Elevated cholesterol and triglyceride levels: Rapamycin can increase blood lipid levels, which may require additional medication to manage. These side effects can vary in severity and may depend on the dosage and duration of rapamycin treatment, as well as individual patient factors.”
You need to seek medical advice however difficult that may be if you want to continue to take rapamycin.
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Thank you all for the helpful replies! I am not with a doctor in this unfortunately, so I better be careful.
One question: does anybody know if it would be advisable to take half a pill, since they are clearly made to pass the stomach. If I cut it in half it would already dissolve in the stomach. Not recommended, I guess. Correct?
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