I’m still skeptical whether 2mg/wk will cause any noticeable effect. I suspect what you are experiencing is psychosomatic.
But yes, when you’re taking so many supplements it’s practically impossible to tease out individual effects which is why I advocate for essentialism… I would strip back everything and just take Rapamune straight without GFJ.
True. If you are looking for effects, you may find them. Thank you for your advice. Unfortunately, I have a large order of Zydus I now need to work through and Rapammune is cost prohibitive here. As I want everything to work well together, I think I will just keep plodding forwards. I was just curious to see if anyone else was experiencing the same effects I was. I beleive that 2mg + GFJ is equivalent to 6 mg without GFJ. I also drink the Rapamycin tablets in an EVOO shot to help for better absorption, so I may be at a higher equivalence than 6 mg of straight Rapamycin. So far, nothing to make me stop taking anything. I can tamp down sugar levels with Metformin and all I’m left with is a bit of passing nausea.
(Just opened a thread - but would fit better here). Wondering if anyone else is experiencing the same thing. The day after dosing Rapamycin I tend to be overalert/hyperactive. I don’t mean I feel energised, I mean I literally feel overalert/hyperactive up to the point where people notice a difference in my behaviour. I need to pay attention to how I come across on those days. (My family will even ask if I have recently taken Rapamycin and comment on my hyperactivity).
Thanks.
I am the opposite. I feel the need to curl up into a ball for a euphoric nap.
According to Dr. Blagosklonny the dosage of rapamycin should be below side effects.
That is a tricky area. I have been experimenting with various dosages for many months with various forms of oral delivery and for me, the maximum dosage without side effects is fairly narrow. i.e. 12 mg with EVOO, no side effects, with 15 mg with olive oil I experience some diarrhea in the following one or two days.
When you say Dr. Blagosklonny says dosage with no side effects, then I would have to discontinue rapamycin because it raises all of my lipids, especially triglycerides.
My interpretation from reading many of his tweets and his opinion paper is the dosage that produces no intolerable side effects. If he meant no side effects, then most people in this forum would have to stop taking rapamycin.
This is Blagosklonny Tweet.
I defined anti-aging dose of rapamycin as highest dose that does not yet causes side effects. If significant increase of LDL is viewed as side effects that needs treatment, then dose of rapamycin should be reduced. By definition, so simple. LDL will drop. Nothing else.
I personally don’t see LDL as a problem when taking in context with triglycerides, HDL, and vldl.
I also ran the life Extension LabCorp blood test for Rapamycin and found my dose.
Hi everyone,
I experienced a significant side effect from rapamycin:
I started taking rapamycin in July for an autoimmune condition. Unfortunately, after the 6th weekly dose (4mg), I developed large blisters (bullous pemphigoid) on my feet. So I had to discontinue the medication. I’m pretty certain that rapamycin caused the blisters as I had never had them before. I also found reports of 2 renal transplant patients who took rapamycin/everolimus developing bullous pemphigoid.
“then dose of rapamycin should be reduced. By definition, so simple. LDL will drop”
Yeh, stop taking rapamycin altogether if you really want it to drop.
The reason I do not put much credence in his statement is he contradicts his opinion that more is generally better. Most mice trials show a dose-dependent life extension for rapamycin.
I had an increase in lipids, especially triglycerides when I was only taking 5mg/week without any special multipliers other than the suggested fatty meal. At my age, I will stay at the higher dosage and treat the lipid problem with diet and supplements.
Bullous pemphigoid is not a known side effect of rapamycin. To my it seems more likely that it is part of the auto immune disease you are being treated for
Bullous pemphigoid (BP) is not a common side effect of rapamycin. However, I found reports of 2 renal transplant patients who took the drug and got the same condition. See link below.
Also, the blisters that I got were not the regular autoimmune BP because no autoantibodies were found in the tissue of the blisters. Biopsy results of the tissue suggest drug induced blisters.
The blisters were not caused by my autoimmune condition because I’ve had my autoimmune condition for 8 years (possibly longer) and I’d never had blisters prior to this incident. And no new blisters developed after I stopped taking rapamycin 6 weeks ago. All point to rapamycin as the cause.
Thanks for posting on this @Kandice . We don’t have too many people here posting on their experiences with the combination of autoimmune disorders and rapamycin, but we do have people who are interested in this and so your experience is helpful for that audience (@rberger ).
Something to keep in mind, even if it is an unusual or rare side effect.
Dr. Green, who prescribed rapamycin for me, thinks that the blisters were an allergic reaction to the drug.
Going forward, I will have to rely on diet and exercise to reduce mTOR activation.
Kandice, I hope you don’t mind me asking, but based on your name I assumed you are a female? As a female I also seem to experience more side-effects than I see most male members mention. Also side-effects that are apparently quite uncommon (but that have been described in case studies). I’m a lightweight/small-framed, so as I mentioned before: that may also play a role. But it has also been suggested there may be a gender difference in side-effects.
Hi Sash,
Yes, I’m female. And I’m very petite at 5’0" and ~105lbs. Yeah, maybe even 4mg per week is too much for my body size.
That is pretty much in line with my experience. Side-effects became more apparent for me when I reached a dose of 4-5mg per week. (5’4", ~92lbs). It was suggested to me to lower my dose. (Which I’m admittedly still too stubborn to do, but I now only take Rapamycin once every 2-3 weeks).
I think waiting longer between doses to reduce side effects is a good idea. One week may not be long enough to completely clear the drug from the body.
When I took rapamycin, I noticed that my nails grew slower (which I don’t mind). Peter Attia also noticed the same thing. I stopped rapamycin 6 weeks ago and my nails still seem to be growing at a slow pace, which leads me to think that the effects of the drug persist even after discontinuation. If true, that means that we don’t need to take the drug that often or continuously to see benefits. Taking less would also be good for the wallet.
About 6-8 months ago it was discussed that Dr. Blagosklonny and Dr. Green started taking higher doses of Rapamycin once per two weeks. (Albeit the last thing I heard is that Dr. Blagosklonny is now taking daily doses of 2mg.) So indeed I chose to space subsequent doses out more, with the hope that the Rapamycin would be cleared from the plasma prior to taking a new dose, as you also mention. After all Rapamycin has such a long half-life. But ideally we would of course test our blood levels of Rapamycin. (Unfortunately I’m not able to do that where I live, but I now finally found a lab abroad where I may be able to test my blood levels of Rapamycin.)
I recently noticed a possible side effect, one I’ve never seen mentioned previously, namely a mild maxillofacial sinusitis. This causes tenderness below my nose on one side, and congestion at night in that one nostril. I’ve read that this can be caused by a weakened immune system.
But there are other possible causes: I have an upper tooth next to a missing tooth that sometimes gets inflamed. I also have a mild but chronic inflammatory response to mold toxins which causes some nasal congestion and post nasal drip.
There may be no connection with rapamycin, so I was wondering if anyone else had a similar problem.
I’ve been taking rapamycin for 2 ½ years, now up to 7mg biweekly after ketoconazole with no recognizable side effects.
Nasal congestion was mentioned in another group. The week after taking Rapamycin I usually have a runny nose and am blowing my nose many times per day - not ideal, but alas. After a week usually this doesn’t bother me anymore.