How to best record what happens when trying Rapamycin

No - in fact there is a fairly large variation in terms of response to / absorption of rapamycin - so even if we know what one person’s response curve looks like, we don’t know what another’s will look like.

it would be very helpful if someone could check their levels after dosing with the branded rapamune vs generic, to see if the Pfizer formulation really make a difference, or is just marketing

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I can’t get a test for rapamycin/sirolimus commercially here in the UK. Unless I could persuade my NHS doctor then that would be the only way as it does look like it’s a test that can be done on the NHS - but it’s when monitoring transplant patients.

I’ve been delving into the world of blood test and trying to work out what might be best. I do get annual blood tests through the NHS and can access the results. Unless a problem occurs then certain tests only come up every so many years, I don’t offered a choice but maybe I can ask for certain ones each time or for extras, no harm in asking :smiley:

I was looking to see if I can get all the results necessary to use the Levine Phenotypic age calculations. My NHS results give me 5 out of the 9 (albumin, creatine, alkaline phosphatase, white blood cells, mean cell volume). I also get a lymphocyte count but the calculation wants a percentage.

I can get eight out of the nine results in a couple of commercially available test panels. Neither the NHS or the commercial ones include a glucose count though so it looks like I would have to get a finger prick test kit used by diabetics. I also can’t tell if the lymphocyte results in the commercial tests would be a count or a percentage - I will have to find out.

The cheapest of the blood tests panels is £139 plus £35 phlebotomy fee and does include 44 tests in all. Another site did a similar panel for £149 so this looks like this might be the going rate. There are loads of glucose finger prick testing kits on Amazon for under £20.

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In other news, the other two batches of pills arrived from India OK, so I’m set up for quite a while.

I did a 3mg does yesterday morning and all seems fine, although I’m monitoring an area on the roof of my mouth in case it becomes sore. I’m not sure if mouth ulcers/canker sores can happen on the roof of the mouth.

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Wow, I paid 800 bucks at our local pharmacy for 100 1mg tabs of Sirolimus. I need to do more research!

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John,

Welcome to the rapamycin news site. People tend to look towards amazon pharmacy and tailor-made for lower cost US prices - see here. Or importing for even lower costs - see here. See list of international pharmacies here.

Usually on the inner lip I think - much more rare on the roof of the mouth:

https://dermnetnz.org/topics/aphthous-ulcer

Thanks, I’ll have a read. I wasn’t sure if canker sore is the US expression for mouth ulcer or if they are different things. My mouth is fine, no effects from the 3mg dose.

Im in the UK too Michael.
Very similar story to yours. I get my Rapa from Varun in India. I also cycle the 8/5 week approach (due to mTOR2 concerns but who knows).

Re blood panels in the uk for the Levine calculator FBC/CBC doesnt routinely provide RCDW so you have to ask for it. I also buy quarterly blood tests from a company called Thriva although ironically they dont do FBC from a home finger-prick approach.

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Hi John

It’s nice to make contact with someone else here in the UK.

I’ve had a look at the Thriva website. Which tests do you have each quarter? I can’t see where they do a blood count at all.

I was looking at the Vitality panel on a site called Forthwithlife.co.uk £139, and the Advanced Well Man on Medichecks.com £149. Both require an appointment with a near by phlebotomist for an extra £30 - I would imagine too much blood is required for all the tests to allow a finger prick kit to be suitable. Both of these include the red cell distribution width.

I was thinking of getting bloods done now, then in about 6 months after round 2 of 8/5 week split, and then at the end of the year and review how things have gone at that point.

Also, I have now discovered that the lymphocyte count (that I get in my NHS results) is just part of total white cell count so it’s straight forward to turn it into a percentage for the Levine calculator, and so it’s fine whichever way it’s presented in the commercial panels.

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Right. I’ve actually bought the Medichecks panel - even though it’s a tenner more it has 20% off at the moment compared to 10% off the Forth panel - makes it about £5 cheaper. Plus the phlebotomy clinic I can use is closer.

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2g is 2000 mg Dr. Green suggests a dose of 6 mg of sirolimus You may be taking a toxic dose

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I think that has to be a typo - probably meant 2mg. 2 grams would probably cause some major problems… and the highest ever recorded doses I’ve heard of are in the 104 to 114 mg range.

Yes, I meant 2mg. I’ll edit my post as it’s the second time it’s been mentioned.

Ah, maybe I can’t edit after a while, never mind.

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No worries - I’ve Fixed it.

I’m now up to 4mg dose with grapefruit juice and no noticeable side effects so far. So I suppose I keep upping the dosage for now.

What is currently considered the upper limit of dosage with the grapefruit juice? Is it about 10mg per week or is that per fortnight. Or shall I just keep upping the dose and see what happens?

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Depends on how “experimental” you want to get, keeping in mind that you may be getting side effects that you don’t “feel”, per se, such as increased LDL cholesterol, triglycerides, insulin resistance, immunosuppression, etc. Some people have titrated up until they start getting mouth ulcers, but others seem to report no ulcers even at high doses.

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Right. I shall bear that in mind.

This week I did 5mg plus the old grapefruit juice. I can’t say that I’m noticing any kind of changes at all yet, neither good nor bad - certainly no side effects such as mouth ulcers. Maybe any positive changes take while to happen.

Some of my favourite exercise things end up giving me some lingering knee pain (Insanity, running). I was kind of hoping that one of the benefits of rapamycin might be reduced incidence of knee pain from such activities. Can’t say I’ve noticed any improvement yet, but I’m only 6 weeks into this experiment, and maybe the initial small doses might not have done much.

I’m going to continue to increase for now, I’ll be on 6mg next. This would be the same as taking approx 15mg without the juice so would this be considered a large dose? Continuing like this then the following week would be 7mg and this would be the end of my first 8 weeks. I’ll be taking a break after that and start another 8 weeks from the start of April.

In other news, I used the blood test results to plug some figures into the phenotypic age calculator. It gave me a score of 53.06 for the phenotypic age, and 52.28 on the est DNAm age (whatever that is). I’m was a few days past 52 years 5 months when I took the blood test.

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I’ve had a bit of sinus trouble and a hemorrhoid this week, things I’ve not experienced for a few years. Is this a sign of dose affecting things? It could just be coincidence, I’ve not heard mention of such things by anyone else.

I’m going to give it 10 days until my last dose for this first quarter, so that will be next Saturday.

I’m going to investigate the NAD+ thing next now that the mTOR suppression has begun.

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I think it’s likely to be coincidental.

Re: NAD
This article suggests that NAD supplementation is unnecessary if you exercise regularly:

https://www.nature.com/articles/s43587-022-00174-3

“… conversely, exercise-trained older individuals had NAD+ levels that were more similar to those found in younger adults”

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