Thanks for the feedback. I am going to see an ENT today but it she does not have other insights, I am forced to believe it’s the rapamycin, especially since I’ve been off of it for 25 days and am no longer waking up with dry mouth. Did your dry symptoms get less with time, or dose, or did you just put up with them?
The problem is that there are lots and lots of interventions that potentially have merit. When it come to joints I have the view that people should take at least 3mg of boron each day. Rapamycin is one of the mitochondrial improvers, but not the only one which will help with everything, but can only go so far.
Rapamycin, however, also has negative effects in holding back cell division. That is why I tend to be on the less frequent (but possibly higher dose) side of the forum.
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It is interesting that a pain reliever (frankincense) was highly valued during a time of all natural foods, lots of exercise (no cars, no bikes), and probably low body fat. I guess inflammaging is not just for modern times.
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The dry skin, mouth, nose has not improved in the 8 months that I’ve been taking rapa and also includes chapped lips. Just exfoliate & moisturize.
Yes, I got pimples, too, along with dry skin& chapped lips. Small price to pay.
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If it were just dry skin I might soldier on, but the frequent nosebleeds aren’t a tolerable side effect for me. The ENT found no sinus-related issues. I think I will do a two-month washout period and perhaps try again with doses every two weeks, starting at 1 mg., and see if it recurs.
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@LCB You can use a small amount of vasoline intranasally to moisten the mucosa periodically. Saline nasal spray also works but may require more frequent application. There are also other non-petroleum jelly’s that you could try. Chances are this symptom will resolve over time.
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I always get scalp acne after a couple weeks of 5 mg rapamycin with gfj. I have a standing order for doxycycline so this clears it up after a few days of 100-200mg per day. I think the rapa benefit is much better than the acne. My arthritis pain goes away in a week or two after each rapa dose.
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I was doing a bit more reading up on the effects of large doses of rapamycin (what is an overdose?)
I found this paper which referred to epistaxis as a known side effect.
Oddly enough I remember having a nosebleed relatively recently, but as I have had nosebleeds from time to time I did not note it in my notes of interesting things that happen (with blood pressure, heart rate etc).
However, it appears that it is a known side effect of large doses. I am slightly pleased by this as it may be a valid symptom of when I took a large dose of rapamycin on 28th July.
I am currently waiting for a transient infection to die down before taking another large dose. I intend taking more frequent blood tests (twice a week) after the dose to watch the values for insulin etc shift and then revert.
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I noticed something unusual and I was wondering if anyone else have this experience. When I take 4mg with GFJ, my sirolimus blood level after 36 hours is about 10-12ng/ml. I do not get any blisters in my mouth. However, if I take rapamycin 10mg without GFJ, my sirolimus blood level after 36 hours is 6ng/ml, but I seem to suffer like an OD of the side effects… like annoying blisters in my mouth. Any observations of your own?
Great that you have tests to confirm levels.
They are about what is expected.
I find the blisters are random and I have not suffered for about a year. Really to prove anything you would have to do at least 3 or 4 reps and randomize the treatments because they may affect each other.
maybe it is because i took a long break… so my body is readjusting. I will check again later.
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So it sounds like you have an N=2 here, one for both dosing approaches and quite a difference in side effects. I’d say it’s too early to draw any conclusions. I’ve only had mouth sores once, in 5+ years of rapamycin use. I’ve had rashes perhaps a half dozen times in the same period. Higher doses tend to bring more rashes, but it’s still a rare event. I don’t put much value in these instances given the rarity of my side effects.
I only ever had mouth sore and fatigue… nothing else… hmmmmm… plus my hba1c is the highest ever… not the most ideal time to restart rapamycin. Oh well… I will see what happens next week.
Personally, I’d work on lowering that before using rapamycin (if it’s in the danger zone).
I am at 6.8 which is still considered pre diabetes… much higher than my usual 6.3. Anyway I eat too much sweets… LOL.
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Your blood levels at these different doses are odd and suggest either a lab error or, what I think is more likely, a difference in CYP3A4 inhibition due to the different dose/batch of GFJ. Note that GFJ contains different amounts of the CYP3A4 inhibitory compounds depending on things like brand, batch, and more so even if you buy the same type from the same store the amount can still differ greatly. This can matter a lot if the dose of GFJ you ingest isn’t particularly high.
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I have resorted to using curcumin before rapamycin … only raise it to 7.2 so far… I will add doxycyline next week and check again. I am trying to avoid using GFJ since I really don’t like the taste.
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My wife has developed a rash and is worried that has to do with Rapamycin usage. Anyone else have that problem?
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Yes - a rash is a pretty common side effect. Search in the forum for “rapamycin rash” and see how people deal with it.
Related reading: Side Effects of Rapamycin (part 2)
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