#453

Have you done blood testing to see levels?

#454

That seems high…no side effects?

#455

I feel sickly for like three days and then it’s like nothing ever happened. Since I don’t take rapamycin all that often anymore it’s not really an issue.

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#456

It is possible, but I’m struggling to think of how I might structure the poll. We have some people taking rapamycin (1mg daily) and some like @John_Hemming taking very large doses once every month or two (and probably people dosing many different levels between these two extremes). The question is how do we structure a poll that can cover this large a range of possible options - I’m open to your ideas…

and unfortunately the integrated polling in this software doesn’t allow branching / conditional questions (e.g. if you have stopped taking rapamycin, why have you stopped"…)

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#457

If you could get people who quit taking rapa to participate, that would provide interesting information.

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#458

Maybe a Cartesian graph, with dose on the X axis and frequency (in reverse order) on the Y axis.

You could ask everyone the question, and ask people who are still taking it to write “N/a” or give an “N/a” option among multiple choices.

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#459

I tend to agree that structuring a poll would be difficult. I have just implanted a CGM to monitor my next dose which i expect to take when i get my baseline blood test results. The draw was on Tuesday. I dont think that fits a simple poll. Depending on the results i may decide to delay the dose.

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#460

i struggled with that, my solution was to ask you!

the best i came up with was to create a 2dimensional grid with period on one axis and dosage on the other (adjusted by a multiplier of 3x if taken with gfj). The grid would be algebraically coded A to whatever and the poll would be to choose your letter.

That may be ridiculous complex though. :exploding_head:

#461

you beat me to the answer!

#462

So I’m trying to figure out what the ng/mL ratio or equivalent is to the rapamycin dosage.

For instance some time back, I heard Matt Kaberlein say that he takes 8 mg and gets a 22 ng/mL in his Sirolimus… or LabCorp test.

Do we know what 4 mg or 6 mg equals out typically in ng/mL?

Any thoughts or physicians who can translate, or explain these numbers?

Thanks.

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#463

I take 4 mg during 4 days (1mg/day) and my Sirolimus trough level is 5.1 ng/ml.

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#464

I have no idea what level of rapamycin ng/ml is good for me or anyone for that matter as that’s only one data point. So I follow my blood markers instead. Am I immune suppressed? I check my The ratio of neutrophils to lymphocyte which ideally in the range of 0.78 to 3.5 per literatures. Anyone has a critic to this approach?

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#465

Monitor the absolute number of WBCs

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#466

Based on your N=1 1mg then equals: 5 ng/mL

Matt Kaeberlein takes 8 mg for a 22 ng/mL

On Monday…I will have my score for 4 mg taken with 5 fluid ounces of fresh squeezed red grapefruit. I will share here.

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#467

For years, my WBC hardly changed. Can you elaborate why watch WBCs is preferred over watch neutrophils and lymphocyte? I do know watching HGB is also important. In clinical setting, doctors tend to watch WBC and Neutrophils (the ability to fight) for infection, HGB for something more sinister.

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#468

Monitoring neutrophils (I would say absolute neutrophil count rather than the ratio to WBC) makes more sense. Neutropenia is an established side-effect of rapa and may be responsible for the apthous ulcers.

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#469

Because neutrophils have a shorter half life the shift is more visible than lymphocytes. You can see this in my second high dose topic. However, both change. Ideally measure both (and they are most of WBC).

The FBC is here:

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#470

We don’t know the averages, and that’s one main reason I have been encouraging people to take blood tests and post their results so we can collect that data. I know that 6 mg resulted in a level of around 2 ng/mL at 48 hours in a few adults anecdotally, but whether that’s typical or they are outliers is hard to say. Optimally we would have average of lots of people.

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#471

Yes… andI I just had a real eye opener. I have been mis-understanding mg verses ng/mL…and use of GFJ…grapefruit juice for years.

I will explain using my siriolimus test from this week. In a second post.

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#472

It can vary a lot per person. I know for me, I had a concentration of 3 ng/mL at 48 hours, after taking 10mg.

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