A recent twitter post series about a user testing extremely high doses of rapamycin got me thinking about what a better way to test increased doses would actually look like.
Obviously, this would be done working in concert with your doctor, but since this is a new area of medicine that even they are likely to lack too much experience, I think its imperative that the user learn, understand and play a roll in the protocol to be used for testing higher doses. The doctors, the patients and even the researchers are all learning in this area - so we need to work together and share information as much as possible.
In an ideal world we’d work with known rapamycin researchers to try to get funding for a virtual clinical trial (similar to the way the PEARL study is conducted) for dosing of rapamycin in anti-aging where all the blood testing is done by your local LabCorp, but funded by the clinical trial so that the results can be turned into a research paper that we can all learn from.
Lacking a formal clinical trial, the best we can do is have all people doing this type of protocol share their data. Crowdsourcing medical data like this has proven very effective in many situations (see PatientsLikeMe, and others), so this is likely the fastest way to improve dosing knowledge around rapamycin in anti-aging.
My goal here is to get some ideas on “best practices” for users who are interested in testing higher doses of rapamycin (or perhaps even for starting rapamycin for the first time).
Below I’ve gathered the recommendations I’ve seen from researchers and clinicians for this type of thing, and reviewed the data from the few healthy human clinical trials that have been done (and what they look at and track), as well as the PEARL trial, etc. - to get some ideas.
I think there are two approaches to this:
- The basic approach is a “minimal protocol” for where there is more of a strict budget. People can then discuss with their doctor and decide based on their budget what makes the most sense - likely somewhere between “basic” and “ideal”.
- Next is the “cost is no object” approach where you look at what would be the ideal approach to doing this if you have a lot of resources (or a funded clinical trial).
We should try to think about a good protocol for testing new dosage levels to try to push the knowledge base for everyone here. Please - I’d like everyone’s input on this. Many of us will all, at some point, probably want to test increased doses for rapamycin.
We should think about, and discuss with the researchers and clinicians, about the best way to slowly and safety increase rapamycin dosing in a way that captures as much information, and helps us track the true effects on our bodies, and then share this information here so that everyone can learn from each other.
Before you make changes its important to understand where you are, so you can measure the differences. So, before you make any changes to a dosing schedule you want to be at a steady state for a while (in terms of medicines, dosages, supplements, etc.) - and check your blood work.
So a starting protocol might be something like this:
- Stabilize at your existing dose for at least 2 months
- Evaluate potential health risks for next month or two - do you need a vaccination (in which case you likely want to stop taking rapamycin for a while), is the pandemic still a high risk, etc.
- Do your blood testing, and make sure you’re healthy (no wounds, injuries, etc):
- CBC (Complete Blood Count)
- CMP (Comprehensive Metabolic Panel)
- Lipid Panel
- Hemoglobin A1C
Ideally - test peak and trough sirolimus blood levels.
Peak blood levels are approximately 1 hour after dosing, trough blood sirolimus levels are tested the day before you plan to take the next dose - so perhaps day 6 if you are on a weekly schedule, or day 13 if you are on a 2 week schedule. $95 Sirolimus Blood Test, Labcorp Sirolimus Level Test Details.
Ideally; test TREGs (T-cell Regulatory Test) (Test details), Labcorp TREGs test
Test TREGS on the same day you test Trough Sirolimus levels to see if there is significant disruption to your immune system.
- Discuss with your doctor possible dose increase increments. At lower doses - e.g. 1 to 10mg, a person might want to increase only by 1mg, at higher doses it might make sense to increase the dose by 5mg (e.g. from 10 to 15, or 20 to 25mg)
- Track blood pressure immediately prior to dosing, and 20 minutes, 40 minute, 1 hour, 2 hours, 4 hours after dose. (I’ve heard some people have spikes in blood pressure - so I’d like to monitor this more)
- Check self daily after new test for any new side effects / benefits noticeable (we can have a form here on this site for people to easily check off on a regular basis).
Adverse Events / Side Effects (from clinical studies, Mannick paper, etc.):
- Mouth Ulcer / Canker sore
- Blood Cholesterol Increase
- Dyspepsia (indigestion)
- Low Density Lipoprotein Increase
- Tongue Ulcer
- Dry mouth
- Neutropenia - abnormally few neutrophils in the blood, leading to increased susceptibility to infection
- Oral pain
- Conjunctivitis (inflammation/infection around eye)
- Erythema - reddening of the skin / rash / dermatitis
- Limb discomfort
- Paresthesia - burning/ prickling sensation in the body, limbs
- Stomatitis - inflamed or sore mouth
- Thrombocytopenia - low blood platelet count
- Urinary Tract Infection
- Muscle aches or pains
Beneficial Events / Good Effects (The positives you’re seeing): list TBD
- More energy
- Reduction / elimination of soreness or aches/pains
- Better Sleep
One week after the new dose, do a new blood test regimen (same blood tests as at baseline). Note any changes in blood variables, and track changes (share on this forum)
Calculate Levine Phenotypic age using spreadsheet (see attached below)