How to best record what happens when trying Rapamycin

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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Thanks for that Maveric78. That’s good to know. I do tend to go through phases of exercising really well, then sometimes it’s intermittent, and sometimes I lose interest and get out of the swing of it for a few months. I’m kind of in that intermittent phase at the mo, I’m going to be doing some exercise today.

I think it might not do any harm to give the NAD+ thing a bit of a boost with some supplementation, if only to see if it makes any difference, but it’s good to know that it should be kept at a decent level during times of consistent exercise.

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As a dentist, I’m pretty familar with canker sores, technically called aphthous ulcers. They’re always on what we call unattached mucosa, which means the thin, moveable tissue in your mouth, such as the cheek and gumline but not right up to the teeth, which is thicker, attached mucosa. Canker sores are never on the roof of the mouth, but can be on the soft palate. Small super painful lesions on the roof of the mouth are usually viral, such as the herpes virus, and should not be related to Rapamycin. If your dentist uses lasers, they can help with the short term pain of canker sores. A silver nitrate solution can cauterize them and help with the pain, typically done by a dentist.

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Hi John. Thanks for that info. The roof of my mouth thing was at that area where the soft palate starts, I think I had just slightly scratched it with some food maybe, it never became anything.

Right - so I did my 8th dose on Saturday - 7mg with grapefruit. Can’t say I’ve really noticed any changes in particular just yet. What I did learn from another thread on here is that curcumin promotes the enzyme that the grapefruit juice should supress, and I’ve been using up some curcumin/vit D supplements recently - so now I know to not take any curcumin around rapamycin dose time.

I shall start back with the rapa in April. In the meantime I’ve been looking to source some dasatinib as I’m going to give that a go in June after my second round of 8 doses of rapa.

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Sorry for my delayed reply Michael.
You are right about Thriva. No FBC. I get that through my GP. I happened to have a low ferritin (longevity-wise no bad thing) and was able to justify a FBC and asked for the RDW-CV needed for the Levine calculator. Thriva offer wider iron studies though so Ive been able to
Monitor iron-binding, saturation etc.

As far as I can tell Rapa has had no effect on my WCC. My data pre-Rapamycin are no different.

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Did the Gandhi Medicos order arrive? How long did it take?