How low is your ferritin level? What was it before rapa? May be it is safer to take rapa without GFJ or EVOO to keep the steady level?
It all depends on your body size. Larger folks can safely take more than smaller ones, IMHO. I am twice the size of some of our smaller members, so it makes sense that they shouldn’t take the same dose as me. I have not encountered any serious side effects yet, and have gone up to 6 mg with GFJ and EVOO. But everyone is different. A few folks have experienced ankle swelling, and that’s when I would back my dosage down. Or in the case of any other serious side effect. I don’t count canker sores, rashes or diarrhea as serious, but that’s my own personal call.
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The plan to take 5mg is what most people do. If you haven’t already, I definitely recommend you read these threads:
Here: Improve Bioavailability of Rapamycin (2)
Here: Rapamycin Interactions with Other Food, Drinks, Supplements and Drugs
Ideally you should work with a doctor. They typically prescribe between 3mg to 6mg in a once per week dose. Going above that and risks start to increase. Regular blood testing is valuable (e.g. every few months or so) to help see what the impact on your body is.
Be sure to study this thread: Side Effects of Rapamycin (part 2)
and watch for side effects.
A high fat meal with rapamycin increases bioavailability by about 30%.
Grape Fruit Juice can increase by 350% to 600% or higher… so you are effectively getting the benefit of 3.5X to 6X or higher times the dose of rapamycin you are taking. The danger here is that for many medications (some statins, etc.) this can cause an overdose situation which can be very dangerous and cause serious damage to your liver. Really read up on this if you are considering this. Its not recommended by any doctors, because of this risk.
If you go higher in dosing above 6 to 10mg in a given week, because of the long half-life of rapamycin, you risk having a buildup of rapamycin in your blood and over time that can cause mTORC2 inhibition and immune system supression. This can make your body more susceptible to infections, and while most of these infections are treatable and mild or moderate in severity, you can read above of studies in hospital / cancer situations where people have gotten severe infections and at least one death has occured (see post above).
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I don’t know what my ferritin levels were before I started rapamycin. My ferritin levels were being checked by the Red Cross before my blood donations and were in the normal range but they didn’t give me a number. Approximately 3 months after starting rapamycin my ferritin level was 39ng/mL then over the next 6 months I gave blood twice. When it was last measured on Feb. 23 of this year it had dropped to 6ng/mL.
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That sounds like something to have checked by a doctor. It might or might not have a connection with the rapa. A quick google suggests it might be caused by lack of RBC (presumably not if they allowed you to give blood) or lack of iron. In either case, that’s a big drop.
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My ferritin levels are not checked often. I have a record of ferritin in 2006 (pre-Rapa period) and in 2022 (12 years on Rapa). Both are within the required range: 2006 - it was 25, and last year 53. Looks like Rapa did not affect it.
My weekly ferritin levels from varying labs are quite variable. I am not sure how much one can rely on any one ferritin value.
It’s probably reliable if it also goes hand in hand with normal Iron, TIBC, MCH, MCHC, platelets, etc.
These are the values I have, they start with a year’s difference, then move to 4 weekly and most are about weekly apart (some are the same sample)
420 337 358 329 332 404 371 412 325 204.6 364 202 337 176.2 176.2 319 172.9 205 253 205 145 175 157.9 165.7 171.4 190.9 180.4 173.4 222 176.7 ng/ml 298 291 mgc/L 202.5 187.8 174.9 140.4 155.4 170.5 123.2 150 152.6 147.6 168.7 177 201 165 203 168 165
To me it looks like it has come down as my metabolism has shifted., but it is quite variable.
When did you give blood last before Feb.23 when your ferritin was 6? You decided it was the effect of rapamycin rather than donating blood, or possibly combination of both? How long are you planning to stay off rapamycin? Why just not taking a smaller dose?
Unless you use the same lab.
I use a few labs. Often the sequetial figures are from the same lab.
I don’t know if rapamycin was the cause, maybe aiding and abetting. I only know that donating blood twice a year before taking rapamycin did not cause my ferritin levels to go below the normal range. My doctor has me on an iron supplement and I will be tested again in a few weeks. I will resume rapamycin when my ferritin levels are back in the normal range. Then I will see if rapamycin without blood donations causes my ferritin levels to drop again.
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Did your doctor tell you that iron is poorly absorbed unless taken with something high in vitamin C.
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Does the Rapamycin affect blood donation?
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He says starting at the 25 minute mark that a colleague of his (maybe this was LEF?) was working to make it available through LabCorp and that it would be very useful to know one’s peak and trough levels.
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You might not be anaemic (yet), but here the link to an article explaining the causes for iron deficiency, you might find this interesting. It could be your diet, it could be blood donations or chronic microscopic losses through GI or others.
In this other article, sirolimus didn’t affect the level of ferritin. (page 5, 5 lines above ‘Discussion’. )
My doctor thinks it was my blood donations exacerbated by my rapamycin routine.
He says, and he is right, people my age (82) don’t recover from blood donations as fast as younger people. Does the Red Cross lie? Interestingly the Red Cross said my ferritin level was okay while my routine blood tests said it was low.
Also, I have none of the common symptoms of anemia:
Fatigue.
Weakness.
Pale or yellowish skin.
Irregular heartbeats.
Shortness of breath.
Dizziness or lightheadedness.
Chest pain.
Cold hands and feet.
In fact, I feel pretty darn good.
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Same with me. My ferritine level dropped very low within last 3 months, but I have no symptoms of anemia. Your doctor is right about a combination of blood donation and side effects of rapamycin causing low ferritine.
I don’t know what affected my ferritine besides rapamycin, mostly plant -based diet and exercise.
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