I’ve never heard of the “numbness” side effect. @Danlalane you might want to stay at a low dose for a while and not increase until the side effect stops. Also - if you went from 2mg/week and then suddenly went to 3mg with grapefruit juice you went from an effective dose of 2mg right up to about 10mg (because taking with grapefruit juice increases bioavailability by about 3.5X) - which is a very large jump. I think people get side effects more when the do large jumps in doses - just from watching people’s results here and on other forums.
I started at 1mg/week, then up to 2mg/week the following week… then stayed at 6mg week for a few months, then slowly tested higher doses occasionally. I’ve had very few side effects - just a canker sore once, and a small wrist rash under my Fitbit.
and @Guywholikessleep I’ve heard of headaches occasionally - but not very frequently. You can search the forums for “headache” and you’ll see a few people talking about them - but from what I’ve seen it seems pretty rare.
Thanks, I am not sure if its correlated with rapamycin use or just something that happens from my sleeping neck posture. Although I do notice I tend to get headaches if I do long fasts.
Food for thought (new study showing mTOR is required/important for brain and spinal cord health via cholesterol synthesis in oligodendrocytes).
Seems contradictory in that I’ve only ever seen evidence that rapa is good for brain health and shows great promise in treating dementia. Also, why wouldn’t organ transplant patients on high dose rapa be having neurological problems? I don’t have access to the full paper
There is a YouTube discussion with Brian Kennedy (NSU, formerly head of the Buck Inst.), where he talks about rapamycin and MTOR. MTOR is definitely something we want turned on some of the time for growth and repair, its just that when its over-active all the time that it causes problems. Thus - the pulsed dosing of rapamycin that has been adopted for anti-aging.
True - but even in transplant patients I don’t think the doses are not so high to completely shut down MTORC1 all the time, and ultimately mTORC2 most of the time.
I think the transplant-focused doctors are trying to find balance between a high enough rapamycin dose so as to help lower the immune system just enough so that the organ is not rejected, but not so low as to make the person too susceptible to infections, etc.
Thus - even transplant patients are not going to have MTOR inhibited all the time. So, while I still need to study the paper, I’m not sure its relevant to most of us using rapamycin - especially on the pulsed weekly or every two weeks type of dosing protocol.
I have already posted about having flatulence and mild diarrhea, but now I know a side effect I didn’t report: My fingernails and toenails have become thinner and more fragile. I attributed it to the fact that I have been spending more time in the spa at the gym I belong to.
Adverse side effects I have experienced while taking Rapamycin at a high dose, 20mg, with grapefruit juice: " This makes the drug reach higher levels in the bloodstream, two to four times the levels seen without a juice boost" This was an oral liquid dose.
Rapamycin adverse side effects I knew about: “Many patients in the study did report side effects. More than half experienced elevated blood sugar levels, diarrhea, low white blood cell counts or fatigue.” My diarrhea lasts 3 to 5 days after a large dose. Not to be too graphic but it manifests in loose, but not liquid stools. This is unfortunately accompanied by “wet farts” that leave tracks in my shorts.
Side effects I didn’t know about: "Duggan, more fortunate than most, has had milder side effects, including fragile toe and fingernails and curly hair. “I now have very curly hair,” she said, “seriously curly. I have to adjust to it.”
It’s actually quite promising that you’re taking an effective dose of 60mg and still only having mild symptoms. I think most of us would take the flatulence for 7 more healthy years!
I may not be getting a higher dose than 20mg. I just use ruby red grapefruit juice that I like from my local grocery store. Some grapefruit juice has no effect. So, since I take Rapamycin on an empty stomach I could actually be getting a lower peak dose than I would get if I took it on with a high-fat meal. The dose I am taking is much higher than is needed for life extension and I certainly would not recommend it to younger people. I am trying to take a high peak pulse dose because only small amounts of Rapamycin cross the blood-brain barrier and I am taking the higher dose for the possible effects it has on delaying dementia and/or Altzheimers. I also, IMHO, think that the short high dose probably has less effect on the immune system than a prolonged dose of Rapamycin taken with a high-fat meal.
I haven’t gotten a cold since pre-COVID and have a pretty bad one now. Granted someone in my home has one too. Anyone find they get colds more easily? And once they have a cold, more prone to ear infections? Sinus infections? Etc. I try not to obsess over things, but trying to attribute anything out of the ordinary to Rapamycin.
So the numbness and whatnot is back and have had more episodes this week. I did 3mg again on Monday. So my third dose. I had Lyme disease several years ago and have had some weird neuropathy come and go since. I wonder if the Rapamycin is triggering something there. I did some reading/research but don’t see a lot of Lyme - > Rapamycin other than a 1950’s study about positive effects on arthritis in Mice. I am having my annual physical next week and going to talk to my Dr. Not sure if I should stop Rapamycin altogether or lower dose or press on. Too much caffeine can trigger similar symptoms so wondering if Rapamycin’s stimulating effect is to blame. Quite the puzzle.
Don’t think nocebo. Numbness and pain in my leg today is pretty severe. Feels like gout. Tongue numb. There isn’t a ton of research on autoimmune interactions with Rapamycin, but logically it makes sense. This study Low Dose Rapamycin Exacerbates Autoimmune Experimental Uveitis - PMC. Mentions you have to be careful with the doses if there is this specific autoimmune.