Side Effects of Rapamycin (part 2)

I found out that the bubbly feeling is not afib. It seems to be tied to the ubiquinol COQ10 supplement I was taking. My wife had the same feeling. We both stopped it and the feeling has not returned. Doesn’t seem tied to Rapa as my wife is not taking Rapa.

Glad it’s not afib.


I would normally suspect cardiac issues, but I wore a holter monitor during the time of the edema (due to other issues I had going on) and they found nothing out of the ordinary. I have also had multiple blood tests and have ruled out immune disfunction, glucose issues and other things that may have been obvious. I am on canaglifozin and have been dosing acarbose at 100 mg per meal. I am very fit, do strength training 4 times per week, watch my diet (for the most part) and otherwise feel fine.

As a side note I wrote a note to Matt Kaeberlein and asked him if lymphedema was possible with rapamycin. Here was his response:

I’d think about probability not possibility. It’s possible you’ll develop stomach bleeding from aspirin and die, but not probable. IMO, it’s improbable that low dose weekly rapamycin would cause unilateral lymphedema but certainly it’s possible. Very infrequent if so.

I have been doing more research and found that there are also cases were Sirolimus is being used to treat lymphedema with some success. I’m very confused right now and have decided to go off Rapa for a couple of months to see if this resolves.

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fragile toe …nails . i have blood under both big toe nails . i think it was originally from some injury as wear flip flops all the time so often stubbing toes but normally the blood should have cleared out after a short time like at most a few days as usual but after rapa has been there for months

Check out my acute angioedema story… mine was DIRECTLY caused by Rapamycin.

Kira, where could I read your story?

Any reason you chose empaglaflozin vs canagliflozin?

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Re: Empag; I had read a journal article on the potential benefits for remodeling of myocardium and the kidney, and I believe my GFR has improved. I dont have the citation handy.

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Good to know, thanks. I’ll look into it.

I don’t know if you all remember when I reported that Dove microbiome soap is the only one that has a low enough ph to not disrupt the skin barrier function. This came from Lustgarten’s book.

There is a lawsuit now about to go forward that accuses Unilever of putting things in this soap that are known skin irritants:

I wondered what all the chemicals were in that soap. Or should I call it a cleaning chemical ( instead of soap )? Honestly I still use it every night and I think it’s great for my skin. They say in the suit that if you rinse thoroughly it won’t happen. I guess I’ll rinse more thoroughly.

Anyway, my wife saw something about this in the news and I thought I’d report.


topical rapa did good.-less gray and a little darker esp where i applied it and eyebrows less gray and a little darker. can’t say for sure whether rapa injections did as much or anything noticeable but probably did but more subtle than direct topical

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taking doxycycline makes me quite naseous and sick like. If you are taking doxy that may be what is making u feel sick. - in fact likely more so than rapa at least for me

I haven’t tried doxy with rapa yet, so I don’t know.

I was taking doxycycline for malaria prevention extensively for prolonged periods and was never nauseous. I remember also having really nice skin and never got any of the travel diarrhea too.


That’s a very impressive improvement

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I have found that the information and guidance from other members of this forum to be even more useful to me than the rapamycin.


What is the typical time delay for a canker sore from a rapamycin dose? I seem to have one that I noticed this morning. I dosed last Friday.

I don’t think there is a standard delay time that we’ve identified in any discussion. I think a few days is what my experience (only had one, several years ago), and I think I’ve heard something like this from others here.

Here are some other conversations, there seems to be a fairly wide range from a day after to 6 days after the dose…

here: Got my first ever herpes labialis / canker sore

here: Cold sores raging early on into rapa

Just a quick reminder that herpes labialis (cold sores) are not the same as canker sores. This is important distinction because antivirals like acyclovir or valtrex can prevent cold sores and have zero effect on canker sores.


My father, who is 76, just started Rapamycin. He is experiencing the same euphoric fatigue that I do. This leads me to believe that the effects of Rapamycin may be related to genetic factors. Has anyone else experienced the same side effects of Rapamycin usage as blood relatives?

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