Side Effects of Rapamycin (part 2)

:roll_eyes: You really are the king of anecdote.

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Sorry, but my lab is unavailable right now. When I have my team of doctors available to do a full scientific analysis, I’ll let you know. Maybe you can share yours in the meantime.

Considering how many stories here are anecdotal, including the one on the front page right now…:roll_eyes:

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Data isn’t hard to acquire, all you need is an Oura ring and quarterly blood tests. Check out Michael Lustgarten’s youtube channel as a model.

But come on, “Rapamycin made me crave hamburgers…” ???

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I was wondering if others had experienced the same thing. If not, then it’s probably not the Rapamycin. I just found it odd and out of character for me. The higher dosage is the only big change I’ve made recently.

I admit, it is kinda cheesy in a cheeseburger sort of way… :wink:

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It seems like many that are experiencing sides are also using grapefruit juice. Is there a possibility that in addition to increasing the blood levels of rapa, it is causing addition side effects in some other manner? The write up on my prescription specifically states GFJ will increase sides

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They’ve done studies on this… they evaluated rapamycin (sirolimus) with GFJ because it greatly increases the bioavailability (by about 3.5 times on average, but it seems there can be a very wide range of responses - from 3X to 6X or higher).

The point of trying this, was to actually reduce side effects for a given equivalent dosing… because in Cancer patients they were testing as high as 90mg doses of rapamycin per day and that causes lots of side effects like diarrhea, GI issues, etc.

The answer to your question about does GFJ increase side effects is sort of yes and sort of no. Because rapamycin increases your “effective dose” by 3 to 6 X what you are taking, it does increase the risk of side effects. But, if you compare the side effects (for example), of taking 30mg dose of rapamycin via 30 tablets of 1mg sirolimus, to taking 10mg consisting of 10X1mg tablets of sirolimus with GFJ, then the side effects tend to be lower than if you are taking the 30 tablets.

You can read all about it at these following links:

Here: Improve Bioavailability of Rapamycin (2)

And the study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4410974/

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Excellent info, thank you

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I’ve been doing it with GFJ and dealing with cystic acne as a side effect. I’ve done a 2 week washout and I’m going to start a higher once-a-week dose without GFJ to see if that makes a difference

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I have upped my dosage to 5 mg + GFJ + EVOO + metformin on a bi-weekly schedule. Surprisingly the negative side effects are diminished. The rashes on my right hand and neck have reappeared in the same spots (exactly) but are much fainter than before. No canker sores. The euphoric fatigue occurred the day after dosing and was much more euphoric and less fatiguing. This doesn’t make sense to me unless my body is adapting better to taking Rapamycin. The only major change is that I have added more exercise into my lifestyle over the past two weeks (daily squats) so this could be a factor. Also have been getting a lot of sleep as I have been on vacation for the past 10 days and been sleeping in an extra 3 hours.

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I started at 1 mg a week with grapefruit juice and doubled every week till I reached 6 mg, still with grapefruit juice.

I got a cold sore on week 2 or 3, which is highly unusual for me — I only got them when I was feeling and eating and sleeping like utter crap and under a ton of stress back in 2020. That’s latent herpes simplex virus so it’s clearly rearing its head due to the immunosuppressant effect of rapa.

Also last week I got a lot of little pimples on my face. I have unusually clear skin so anything like that stands out. I treated them with a high frequency wand and they’re gone.

A few days ago I also felt the slightest hint of a UTI — because I’ve had them so much in the past I have a spidey sense for when one is around the corner. Went ballistic on cranberry extract pills and it seems gone.

The last thing is elevated resting heart rate the month since I’ve started taking rapa.

This last one is the only thing that truly concerns me as it probably indicates that I’m taking my next dose before all the rapa has cleared my system. Haven’t done any blood tests yet to perfect my timing so I’ll try switching to biweekly schedule of the same dosage which is still pretty high if taken with GJ.

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Re: UTI: try D-Mannose instead. It’s astonishingly effective. I would now use d-Mannose over anything when I feel UTI coming on. I have found it more effective than even Rx antibiotics.

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I ordered it a few days ago! Between it and the cranberry pills those UTIs won’t stand a chance. But it was interesting that one was starting to bud. Rapa does have a mild immunosuppressive effect even at our pulsed weekly doses. I think part of body inflammation attacks pathogens so a side effect of systemically lowered inflammation can be greater susceptibility to them. Even the skin rashes and pimples people have reported have an element of dermal colonization by fungi or bacteria.

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Rapa does have a mild immunosuppressive effect even at our pulsed weekly doses. I think part of body inflammation attacks pathogens so a side effect of systemically lowered inflammation can be greater susceptibility to them.

I have found the same. I find it intriguing that–for myself, anyway–these side-effects seem to fade after weeks of doses. I wish I understood that better.

Hmm what is your dose though? And do / did your symptoms include higher resting heart rate? It’s the only one that worries me a bit. Yeah the others have faded for me, the body probably adjusts to a new equilibrium.

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Have you tried biweekly?

@medaura, my current dose is 2mg+grape-fruit (whole fruit.) My process has been to stay at a dose until side effects (effects I don’t like, that is :smiley: ) go away. Only then do I consider going up.

No, I have not had a higher resting heart rate. That would concern me as well.

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Have you tried biweekly?

@L_Hayes I am on a weekly pulse cycle. I have not used an every other week pulse yet. My process is slow and steady, keep track of effects, and re-eval every cycle. If or when I see a reason to try every other week, I will.

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Sol, did you deal with worsened fatigue on starting? I’m taking 1mg * twice weekly with the goal of moving to 2mg twice weekly. I have me/CFS, fibro, Dysautonomia. Even at 1mg, the rapa is wiping me out terribly. I must stay in bed and several times a day I fall into a hard crash kind of sleep, every day. This happens even on the 3rd day post dose (and then it’s time to take a new dose).

I’ve just taken my fourth dose. I really don’t want to give up but also curious how I’ll know if this sleep may be helping me heal vs a sign that rapamycin is not right for me.

As someone with CFS, did you experience this kind of crippling fatigue on startup? :pray:

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Just curious, why do you take it twice a week? For possible healthspan/longevity purposes it is typically taken once a week.

My doctor said in my case the goal is to keep mTor down consistently to modulate the immune system. She suggested this type of dosing is getting better results for autoimmune conditions.

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