How to best record what happens when trying Rapamycin

Hello All

I’ve recently taken my first 2mg dose of Rapamycin on 1st Jan 2022. Is there an official way of recording dosages and results in order to feed into the collection of results of people experimenting with Rapamycin, or do I just put things in a thread here on the forum?

Info so far:
I’m from England and have sourced Rapamycin from India. I’ve sourced 3 lots of 120 x 1mg across different brands and from different suppliers. The first batch of 120 have arrived and the other 2 lots are in transit. Here’s what I paid and who I used:
120 1mg Biocon from Varun Medicals $96 + $40 shipping (£113.51 incl transfer fees) - ARRIVED
120 1mg Sirokem from Kachhela $48 + $35 shipping (£71.90 incl transfer fees)
120 1mg Zydus from Gandhi Medicos $110 + $35 shipping (£113.73 incl transfer fees)

All suppliers sent me photos of packaging and expiry dates.

No noticeable side effects from the first dose of 2mg. I’m planning on taking 3mg next time, then drop back to 2mg plus grapefruit juice then 3mg plus grapefruit juice and I will see how I’m getting on. I’m thinking of doing 8 weeks on and 5 weeks off for the first 6-12 months depending on how things go and what I learn.

I am also looking into blood tests and grip strength measurer and a link to a hearing test so that I can track some variables. I can’t find anywhere in the UK that will do a sirolimus blood test for money, I’m not sure if to mention this to my doctors as I would imagine they won’t approve of such experimentation and would not want to help especially as it would be using NHS resources. Maybe I should tell them.

Anyway, any help or advice for what I should be doing to make my observations/results useful to the overall mission then please do let me know. Thanks

4 Likes

Michael - thanks for posting. You gave a lot of great information there.

Most people don’t get much in the way of side effects - but we’d love to hear about them and the positive benefits you see, changes in blood tests, etc. - as we’re all trying to learn from each other here. So yes - please just post your results here as you identify them. I like your idea on testing grip strength (I also purchased a grip strength measuring device for about $20 from Amazon to track that variable - and its all good with a grip strength of a 25 to 30 year old - but I didn’t do a pre/post test, sadly).

Ideally - you’d get a blood test before starting rapamycin and again every few months. I personally like to track my results using the Levine Phenotypic Age calculations (see more info here, and excel spreadsheet at bottom of page) to see how things are changing over time. Its free and pretty easy, other than for the cost of the blood tests. If you find a good source in the UK for the lower cost blood tests please let us know.

I did something similar to you when I was first starting with the rapamycin - purchasing different versions / brands from a number of different vendors. They all came through fine - so that was my first experience with the Indian pharmacies, and it has all been good since.

Regarding telling your doctors in the NHS about what you are doing - Generally its a really good idea to tell your doctor exactly what you’re doing and get them to work with you. Plus - even if they are against the idea of what you are doing, its good to inform them about the science and your actual results. I printed out many of the studies / papers and articles on Rapamycin for my doctor, and while my main doctor would not prescribe it (Kaiser Health in the USA), he was very interested, and would work with me in terms of monitoring results, etc.

Interested to hear that you shared info with your Kaiser doc - I have them too and have not share any info re rapamycin dosing. As an institution they are generally one of the more conservative shops in terms of being up on the ‘latest research’. Did you share your entire protocol with them?

I did plug in my numbers into the Levine calculator recently, but only after I’d been taking Rapa for 6 weeks or so. I’m doing ok it seems - despite being 52 it says I’m more like 41. I’m hopeful that some of my ‘old man aches’ - some minor joint issues, soreness, etc from working out and old running injuries will improve over the next 6-9 months.

Feel pretty good otherwise - I take 5mg Rapa every 7-9 days and will likely start taking with some grapefruit juice. I also take berberine, alpha lipoic acid and arginine/citrulline.

1 Like

Yes - I first started with Metformin - and my Doc (a young guy) - and remember, I’m in San Francisco - said they’d prescribe metformin to anyone who asked for it (and was familiar with the aging research related to it) but I had to pay the $11/for a 3 month supply 1500mg/2X day). He was not familiar with rapamycin - but took all the research and would work with me without a problem.

I have tried to pitch my Kaiser doctor on the idea that Kaiser should have a special longevity program for the more knowledgeable, longevity-focused Tech people in the SF Bay Area as part of a leading edge clinical trial program that they could start in SF and then slowly expand. There is a ton of interest in this type of thing… rapamycin and metformin, etc. - in this area and so they could easily start controlled trials and get data and publish results that could help their broader population base. I love Kaiser - I have no health issues, and I’m always in and out of the appointments in 30 minutes or less. I am always impressed with their efficiency and speed.

Michael, you keep saying “2g” I’m assuming (hoping) you mean 2 mg (milligrams as opposed to grams)?

2 Likes

Ha ha! Oh yes, it’s mg isn’t it :smiley: :smiley:

Just re the grapefruit juice thing - having read quite a lot of stuff on here, the age.reversal site and other places via Google then I seem to remember a comment that you can’t use ready made grapefruit juice. I was going to double check what this said but can’ remember where I saw it. So my question is will it be best to buy grapefruit to juice myself, or can I buy grapefruit juice?

Also, I also remember reading that it’s best to drink some 12 hours before and then just before taking the tablets. So as I’m doing this on a Saturday morning for now I would have some juice around 7pm-8pm Friday evening. Does this sound correct?

And around 6oz/200ml each time?

1 Like

Ha. I’m in Marin. Agree Kaiser is great for regular healthcare, and they’ve even stepped up around helping my sons, who have a rare genetic condition. I hear horror stories about other providers.

1 Like

Hi Michael - that approach sounds very similar to what I’ve seen in the clinical study that tested grapefruit juice and rapamycin. We’ve documented it here on the page “How to increase bioavailability of Rapamycin

The caveat is that this was one study, they saw a large variation (from none to acceptable) level of results with different types of grapefruit juice - so when I’ve done this I’ve used either fresh grapefruit juice or I just eat the fruit the day before and then again a few hours before I take the rapamycin.

Just be aware that while you are “probably” getting somewhere around 2X to 3X the effective dose of rapamycin - there are quite a few unknowns so you shouldn’t assume a high level of confidence in any assumed exact measure of rapamycin exposure.

Exactly, I wouldn’t assume an exact measure of exposure, but it makes me think that to some degree that must also be true as to what percentage you don’t absorb under non grapefruit juice conditions. Or do we know that? Do we know that usually we will only absorb, say, 60%?

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

1 Like

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.

1 Like

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.

1 Like

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

1 Like

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.

2 Likes

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.

1 Like