Side Effects of Rapamycin (part 2)

Agree with others that I wouldn’t worry too much about slow wound healing outside of elective surgery where you might want to take a rapa holiday. Rapa inhibits mtor which is going to slow down their division. It’s not a “side effect” it is the direct effect of rapa on cellular metabolism. One reason rapa is used as a chemotherapeutic.

Re Libido that isn’t a common complaint of rapa here. In fact some people claim the opposite. I’m not suggesting your impression isn’t real but you might want to give it some time with the reassurance that decreased libido isn’t a common side effect and perhaps something else is causing it or perhaps it will resolve on it’s own. It’s easy to blame every new sensation on rapa when you first start taking it. My suggestion is to hold steady at your current dose and see how your body adjusts to tolerate it.

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I started out on rapamycin at 6 mg and had great results for a year. Thought more rapa might be better (according to Blagoskylonny) and went to about 12 mg weekly for 7 months - biological markers took an aging hit at that dose, and I would get blocked eye ducts or ulcers - like in mouth only in my lower inner lid.

Since staying at 6 mg no problems. A few days ago decided to up to 8 mg for my LABCORP sirolimus test. Bad idea - next day had eye issues - first time in years. looks like pink eye… feels like a piece of grit in my eye lid. Luckily it seems to be going away after 2 days. No more 8 mg dosing. My sweet spot is 6 mg for now.

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Thats an interesting observation.

Maybe my needs are increasing with age. Twice a month I regularly dose 8mg rapa 1 1/2 hours after a maximum extraction from a grapefruit, (or occasional ketoconazole if I cant get grapefruit). So I estimate an effective dose of at least 4x.= 32mg…

The side effects keep diminishing because in the past they were worse at 6mg plus a booster than they are now at 8mg.

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I believe that was the general thinking of Dr. Blagosklonny.
I have been taking relatively large doses of rapamycin for quite some time, and many of my blood markers have continued to improve. I don’t disagree with @agetron. He is probably taking the proper dose for his age and physiology.

Currently I am taking 6 mg once a week with ruby red grapefruit juice and 10 mg Bioperine, and I put the pills into enteric-coated capsules before swallowing.
At this dose I don’t have any side effects other than less energy on the day after.
Also, I generally exercise on the day after. This, I hope, maintains the peak but reduces the area under the curve. Trying to simulate the curve of Everolimus.
Pulse, but no suppression of mTORC2 and possibly avoiding the rebound effect if I have to stop taking rapamycin for some reason.
It is now convenient for me to get my levels checked at a local lab. But I just have been procrastinating.

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I was ramping up from 2 mg to 4mg/week then to 6 mg/ week. I got mouth sores first week at 6 mg. The sores were annoying but not severe, I just used Listerine mouthwash. They took a full week to clear, so the next weekly dose I went back down to 4 mg. After that, I went back to 6 mg and have not had them recur after 4 weeks at 6mg, 1x per week.

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Since this post I believe I’ve figured out why I was having side effects.

I had/have pericoronitis, which is a partially erupted wisdom tooth with the gum inflamed and grown over it. Food particles get caught in that area. Rapamycin messes with the immune system somewhat and it left me prone to an infection in the area.

Since then I had been to a dentist and they gave me a special syringe that allows me to shoot warm salty water under the gum every night to wash out any particles. I’ve not had an issue since starting this.

This hopefully will be surgically removed and the issue permanently resolved. Until then, this solution will suffice.

Additionally I stopped using berberine the night before, the morning of and the night of rapamycin dosing to avoid excess inhibition of the CYP3A4 enzyme that can cause rapamycin to concentrate more in the blood or hang around longer. I replaced those doses of berberine with a 500mg extended release metformin.

Metformin also inhibits TGF-β1, which is something rapamycin supposedly activates. This might help further reduce incidence of side effect as TGF-β1 in excess can be negative.

I also have begun swishing methylene blue around my mouth right after dosing rapamycin.

I also have started taking ezetimibe the day before, day of and day after rapamycin dosing.

I tried 2mg rapamycin last week with no issue. I took 3mg today. Next week I’ll take 4mg. My hope is to build up to 6mg a week and sustain this.

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completely agree that the side effects are a manifestation of mTor inhibition. Trying to then eliminate the side effects may end up with new unanticipated problems - kind of circular. Every action has an equal and opposite reaction (can’t remember where I heard that one…) I am thinking that the bonuses of rapamycin are worth the side effects, and it does make sense to lower the dose as the first effort to deal with any that are difficult to cope with

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Update. I’ve been doing 6mg a week no problem.

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I recently noticed an unusual tendency in my glucose levels dropping too low (per FreeStyle Libre) after I take Rapamycin (0.5 mg). At first it goes to approximately 160 level and then within an hour drops to 60. Please share if you observe the same.

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I’ve never noticed anything like that happening, but I plan to put on a cgm this week, so I’ll pay attention to any activity after my weekly 8mg dose.

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One the day of my 6mg rapa I´m always unusually hungry, unfortunately. Normally I´m perfectly fine without food for a day or more.

You can notice it only if you wear a monitor - otherwise how would you notice it?

You are correct. Sorry, I did not share enough info.

I have been using cgms for years, but not continuously. Over the past year, while wearing a cgm and on rapa, I never noticed this. I haven’t worn one lately, but I do plan to put another one on this week.

When I take my dose on Sat, I’ll try to pay attention to what happens on the cgm incase it provides any info that helps you.

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Oh, I see now, so do you mean that within an hour of taking Rapa your glucose didn’t move any direction? I mean Rapa didn’t affect your glucose?

And it dropped today after Rapa exactly like yesterday. And I’m not on Metformin, Berberine, Acarbose or anything to control my BG. I was always under impression that BG gets elevated because of Rapa. Could it be dose dependent? Taking 0.5mg Mon - Fr and Sat/Sun - off.

Lara, exactly what time are you taking the rapamycin?
Also - what else re you doing during this time that your blood sugar is rising and then falling? Are you having breakfast (taking the rapamycin with food?) - so the food is causing the curve?
What happens if you delay the rapamycin dosing until noon or 2pm - how does your day’s curve look then?

It would be interesting to compare the measures on the days you don’t take rapamycin too. Perhaps give us screen shots of Thursday, Friday, Saturday Sunday together so we can see the difference?

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with or without GFJ?

Do you take any other supplement… like Vitamin C in particular. I wont trust CGM if you take a lot of supplement. Only the prick test is more accurate.

I am taking rapamycin around 9 am with my breakfast smoothie (kefir, 2 kinds of berries, buckwheat, chia, flaxseed and couple supplements). Food drives it higher of course, but what surprises me is that it quickly goes down below 70 and will stay that way till next meal. It’s a positive that glucose goes down in between meals, but before it would stay much higher for a long mer time. I’m wondering why it changed to healthier direction. I think it’s my new Rapa dose, not the food bc food is the same as before. I’m trying to figure out the best Rapa dose that would keep all my biomarkers in optimal or close.

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I do take supplements but not vit C. And I never eat grapefruit.