Insulin, Rapa and Glucose...anyone else feel like this?

Hi,

I started on Sirolimus a few weeks back. I am 65 y-o, 180cm, 75kg.
I started very conservatively; 0.5mg/week, then 1 mg, then 1.5mg. Then I got to a 2mg dose. I was taking it on a Friday.

The next day (Saturday) I woke up with a very mild headache. I had breakfast and went about my usual activities but by lunchtime the headache was bad. I also felt very weak; shaky and slightly sweaty. My wife checked my temperature: normal. My blood pressure and pulse were also normal.
After lunch I began to feel really bad. Egregious! Terrible! The headache was splitting and I felt so weak I could hardly stand. Strange thing was, I felt really hungry and was not nauseous at all. I have a history of migraines and they always make me feel nauseous and I end up vomiting, so this was unlike a migraine. It was so bad that I considered calling an ambulance.
Finally, at about 4PM I started to improve and by 5PM I was feeling better.

Now, a non-fasting blood test taken in 2021 showed I have a very low insulin level: 2 MI/L.
My fasting glucose level is typically about 4.5. However, if I do hard physical work and don’t eat regular meals I can get “hypo”…I have all the symptoms of low blood glucose (weak, sweaty, spots in vision, headache etc).

I have a sneaky suspicion that Sirolimus may have dropped my insulin level so low that I was unable to utilise glucose, causing my splitting headache, weakness and hunger.

Just wondering if anyone else has had this reaction? Could it be that people who take higher doses of Sirlimus also have high/normal levels of insulin (20-30 MI/L??) and so they don’t feel what I felt?

I stopped taking the Sirolimus after that. Trying to build up the courage to start again…

Cheers.

Just an idea, but I wonder if going into a state of ketosis might help or indeed taking some exogenous ketones as a fuel for the brain when you take the Sirolimus.

I’ve taken up to 20 mg with a CGM on and my glucose doesn’t change at all

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Sirolimus increases glucose levels. You problem is not rapa. Im 75 yo and take 10 mg weekly for 4 years, and none of your problems

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Are you taking the 10mg steady without break for the four years?

Rapamycin has had zero effect on my insulin/glucose levels as far as I can tell. I currently take 20 mg every 14/15 days. The 20 mg dose is the only one that has adverse side effects manifesting as flatulence and mild diarrhea for a few days after taking it. On the plus side, the 20 mg dose is the only dose I have taken that produces mild euphoria for a few days after I take it. Everyone’s body chemistry is different, I am sorry you had a negative experience.

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No, took 6 mg. intially and over the first year increased it to 10. I was Dr. Greens 2nd. patient in 2017. It will be 5 years total next month. My Phenoage is 13.3 years younger than chronological.

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Thanks to everyone who replied.
I’m sure you all had no symptoms as I did. But perhaps that’s because you have normal insulin levels to start with?

Anyway, I’m back to 1.5mg/week now. Yesterday I had a meat pie and coffee at 2pm. By 5:30 I felt weak and shaky, so took a glucose check just out of curiosity. It was 3.5, so definitely on the low side. I’ll continue an see what happens.

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