Side Effects of Rapamycin (part 2)

I seem to have developed a new side effect of Rapamycin. I still get mild euphoric fatigue, but now I get mild-bottom-of-the-foot swelling. When I walk, it just feels like I’m walking on mildly swollen feet. You can’t tell from outward observation, but it just doesn’t feel right. (I have to switch to my well-padded ASICS Kayanos to relieve the pressure.)

I think it started occurring when I started taking 6 g of Citrulline daily. The swelling starts a day after taking Rapa and lasts 2-3 days before resolving. I take 6-9 mg equivalent (2-3 mg + GFJ) weekly. I alternate the doses each week. Does anyone want to guess why this might be happening?

I’ll try a test to find out and stop taking Citrulline the day before and a few days after taking Rapa.

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Citrulline might under certain circumstances. be cytotoxic. As do nitric oxide. I am just speculating that to much C might have undesirable effects. (I take small amount of citrulline. 0.5 gr twice a day.)

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Cytotoxic respones sounds bad but they might be someting we sometimes desire. Just like increased ROS produced by senolytics or cancer drugs is a mechanism that clear the body from unwanted or otherwise dysfunctionel cells.

For instance curcumin increase ROS in some cancer cells. Just an example.

@destrider Others have reported ankle swelling/edema with higher doses of rapa as well. Not sure what’s going on but just to let you know you are not alone.

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Thank you. Yes, it’s somewhat odd. Yesterday it moved up to my calves. They just felt huge. However I had just worked them out.earlier in the day. I’ll continue to watch it. It seems to occur in the early evening now after I’ve gotten home from work. I’ll try cutting back on the Citrulline to see if that’s the cause.

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That symptom for me cleared when I moved to a 2 week cycle. I didn’t increase the dose so I’m now taking ½ as much (4mg with GFJ 12 hours and 2 hours prior, but no fat or any food beside grapefruit for that matter)

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Could be the case but it could also be people doing other stuff and mistaking the negative effects for rapa. I took for couple 12mg plus GFJ which would mean I was probably absorbing the equivalent of taking 40mgs. Did twice and had absolutely no negative side effects. Even a small skin infection that was showing up at lower doses, it just disappeared for those two weeks.
Btw I know take weekly 3mgs with GFJ. Didn’t see anything different from taking 3mgs as opposed to 12, so I just decided to stick with 3mgs.

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The response to Rapamycin is very individual. It’s not yet clear why some people develop certain side effects on small doses and others don’t. Recognizing this and many other individual traits , using an individualized medicine will help, hopefully in the near future.

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@Brimstone, I have swollen feet as well, a condition that started about the time I began taking rapa. But I’ve also taken prednisone for gout and cortisone shots for a compressed nerve in the same time frame. Hard to isolate the cause and effects.

@Bettywhitetest, After more than a year on rapa, I can’t name a single advantage or disadvantage that I know indisputably has resulted from taking the medication.

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@DeStrider Here’s a checklist for edema from the Mayo Clinic. It may or may not be helpful.

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At this point, I’m pretty sure it’s the Citrulline. I’ve cut back my dose from 6 g to 2 g daily and the edema is gone. Thanks for all the help. :slight_smile:

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On 2nd week now. I am 6’ 3 1/2 , I weigh 212 lbs and am 60.I take 4 mg but because of side effects I am switching to an 8 day schedule of instead of 7. My goal is to hit 6 mg. Negative SIDE EFFECTS: 1. Difficulty b reathing at night, dry mouth, breathing out of mouth. Dehydration 2. Three dry skin blotches on face that have never been there. One at hairline, one on forehead, one on check. 3. Sleep issues. If I stay up late one night it really throws all my sleep off for several days. 4. I got two medium sized purple dots that showed up at my scalp line. I have never had those anywhere on my body before. I increased my dose from 2 mg the first week to 4 mg the 2nd week. My goal is to not disrupt my sleep with late nights and start drinking a ton of fluids with minerals and electrolytes. I just ordered some potassium supplements too and a big water jug. Positive SIDE EFFECTS: Lower anxiety, greater concentration, lower inflammation, weight loss. I will measure all my biomarkers and visceral fat, body fat and Duniden Pace Test to see what happened after 3 months.

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Just a quick question… what time of the day are you taking the rapamycin? I’m fine if I take it in the morning, but if I take it afternoon (or later) it really messes up my sleep.

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1st thing in the morning with EVOO. I was up all night playing poker on Monday. I took the Rapa Monday morning. I still have not recovered in my sleep and it is Thursday. I am guessing I just need to not pull all nighters playing poker. I could recover quickly without Rapa but I will just leave the game at a reasonable hour in the future. :slight_smile:

Its interesting… I’ve been taking rapamycin for years and I find the opposite. I have much more sleep-deficit resilience. I can pull all-nighters without any issues now (I couldn’t pre-rapamycin, if I tried I get headaches and be useless the following day). Perhaps it is a transitional issue for you, and it will change after a year or two of use?

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I have pretty good sleep on Rapamycin (take it in the morning). In fact my sleep duration increased from 7-8 hours to 8-9 hours ( could be winter effect).

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I was having same issue with sleep when taking it in the morning. so now I take it literally couple minutes before I go to bed. It seems ok now (since I usually sleep within 5-7 minutes and that is not enough time for Rapa to be absorbed and mess up my sleep).

BTW, for me taking it this way is having more of regenerating affect also. So basically, I get the peak amount in the blood while asleep, and for some reason I feel way more rejuvenated (if that makes sense) than when I was taking early in the morning.

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I hope so. I want to play poker with my buddies! :slight_smile:

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I’m brand new to rapa, week 2 of a 1mg dose, and my reaction seems to be unusual: I feel awful the day I take it, and the whole next day. Like a flu, body aches, headache, slightly raised temperature, fatigue, nausea, shallow breathing, appetite loss. All my muscles hurt. Cold symptoms out of nowhere. I’m 38, a woman, 6’0" and about 150lbs, so 1mg shouldn’t be kicking my ass like this. Did anyone else experience this when they were starting out? Did it diminish over time?

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Unfortunately, there have been people who have had a very bad response to Rapamycin like yourself. I’m sorry to say that if your body is having this profound effect to the drug, you may not be able to tolerate it and I would suggest discontinuing it’s use unless you can track these symptoms to another source.

If you truly want to see if it is Rapamycin, I would stop usage and wait for the side effects to clear. Then I would wait a few weeks and try again. If you experience the same negative side effects, it may be that you are unable to tolerate Rapamycin.

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