Hello Rapacommune! I just took the first dose of 1 mg and as it went down my throat thoughts were “eeeee bring it back out!!! What am I thinking!!! The doctor said don’t!!!” and so on. I took it with a glass of water, no food, fatty or otherwise, and am trying to keep my focus on the Bundesliga Game between Leverkusen and Bremen, but panic has set in!
How was it with all of you when you took the first dose?
I read a lot about effects and side effects real and imagined, but how did you feel right then?
I’m hoping the weirdness I feel is just plain old anxiety, because I don’t take any medications for anything, so this is a first, and it’s so much like walking into uncharted woods full of good and bad creatures
I didn’t feel much the first time around. A couple of times when taking rapamycin I felt tired but most of the time I continue to feel no difference at all.
I took my first 1mg a week ago sat. I had a little extra energy that day, but it was probably a coincidence… my energy levels are all over the map! But other than having a good week, nothing was different
Yeah, I felt it pretty quick. 20 minutes to noticing head pressure, and sense of being off. Good mood changes and focus improvement followed that. Congrats on your first dose. Reactions vary, and vary from dose to dose.
For me, the whole initial set of responses was first-time only and did not repeat.
You’ll probably be fine. You’re not alone in your reactions, physical or psychological.
This is reassuring. You articulated the feeling I had perfectly - head pressure. A little off. Something changed. It’s too vague to call anything, but most definitely I’m not the same. And this was 1mg, so for sure it could be puppies and rainbows
I’m six weeks in to my first round of Rapa…at 4ng a week now.
After my first dose (1mg) I had a weird bubbling noise in my left ear. Went away never to recur. (But it was definitely strange). Had difficulty getting to sleep that night…(that has recurred).
The most inconvenient side effect was getting diarrhoea that required urgent attention to avoid embarrassing incidents. That lasted two days. I know it was the Rapa because it follows most (but not all ) doses. Now I know to expect it, I’m better prepared.
Oh no diarrhea! Weird and strange things! One day all this will be recorded somewhere.
I have dry eye troubles (I’m hoping rapa helps this in the long term) and today they feel much drier, like they’re made of sand.
I keep doubting that anything I’m feeling is related to the dose … but reading these responses makes me think maybe something is happening and it’s not all in my head.
Thank you all for replying - this is really such a great community!
Why your doctor advised against it? Also I never took 1 mg dose as I started with 2 mg and then gradually worked up to 10 mg once a week. For me even with a low dose of 2mg the observable effect was increased perceived warmth during the first couple of nights after I take it. It was easy to spot as due to my calorie restriction diet, I feel cold otherwise. Nothing else I have ever seen in the last five years. All that said rapamycin is a fairly powerful medicine and you need to keep track of your health with regular tests.
And this was 1mg, so for sure it could be puppies and rainbows
I wish folks would stop assuming that they are imagining things when they report initial rapamycin effects.
If you’ve never had rapamycin before, your first dose–1mg or whatever–is an infinite amount more than you’ve ever had before. You have no idea how your body will respond. Just because someone else has no reactions to 1mg means nothing for your body. It might mean they are discounting their reactions.
1mg of rapamycin is not a low dose. It’s a dose. Responses to rapa vary wildly, and change over time with new doses. My most intense and surprising symptoms from rapamycin were from my first 1mg dose, and most of those symptoms didn’t repeat, even at higher doses.
I encourage you to trust what you notice in yourself. Maybe it’s the rapa. Maybe it’s not. But discounting your own reactions is simply training yourself to discount your reactions. Train yourself to notice instead. You can assess separately.
Hello! This is my first post. Yesterday was also my first dose of Rapamycin, I took 1mg as well. I felt a slightly vertiginous feeling all day which was very mild and didn’t really bother me at all. Nothing today. Next week I’ll probably go up to 3mg. I’m very happy I discovered this website! Nice to meet everyone.
You are exactly right. And you know, I wonder if this is a typically woman response - to not trust your own feelings because you read that it’s probably “all in your head” as if your head doesn’t count. Thank you for this.
I am also so happy I discovered this site! as @sol said, I discounted my own sensations entirely yesterday. Vertiginous, head pressure, slightly blurry at the edges, I felt all these things, and I am “admitting” them to myself because you and others have said how they feel, in some way allowing me to own my sensations. I am very grateful to this community for so many reasons - and now this too.
The doctor advised against it because … I guess it’s off-label, and he was honest about it not being his area of expertise which is organ transplants and cancer. In spite of this, he is very much willing to take care of me, by ordering bloodwork more often to check that all’s ok.
As others have said, everyone is different - maybe you should just go up slowly according to plan We are all groping in the dark, hopefully
learning from each other. I tend to be cautious, though. Do post your experiences! Good luck
1 mg is generally homeopathic unless you have some unusual idiopathic reaction.
Most folks in the 80 kg area need to take a single dose of 8-12 mg - often times with agents to improve absorption in order to even generate a level that by serum level is therapeutic.
I suspect there is huge placebo effect when someone takes a medication like this as one focuses on every body sensation and looks for every possible side effect. Probably human nature.
