Side Effects of Rapamycin (part 2)

Kandice, I hope you don’t mind me asking, but based on your name I assumed you are a female? As a female I also seem to experience more side-effects than I see most male members mention. Also side-effects that are apparently quite uncommon (but that have been described in case studies). I’m a lightweight/small-framed, so as I mentioned before: that may also play a role. But it has also been suggested there may be a gender difference in side-effects.

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Hi Sash,

Yes, I’m female. And I’m very petite at 5’0" and ~105lbs. Yeah, maybe even 4mg per week is too much for my body size.

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That is pretty much in line with my experience. Side-effects became more apparent for me when I reached a dose of 4-5mg per week. (5’4", ~92lbs). It was suggested to me to lower my dose. (Which I’m admittedly still too stubborn to do, but I now only take Rapamycin once every 2-3 weeks).

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I think waiting longer between doses to reduce side effects is a good idea. One week may not be long enough to completely clear the drug from the body.

When I took rapamycin, I noticed that my nails grew slower (which I don’t mind). Peter Attia also noticed the same thing. I stopped rapamycin 6 weeks ago and my nails still seem to be growing at a slow pace, which leads me to think that the effects of the drug persist even after discontinuation. If true, that means that we don’t need to take the drug that often or continuously to see benefits. Taking less would also be good for the wallet.

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About 6-8 months ago it was discussed that Dr. Blagosklonny and Dr. Green started taking higher doses of Rapamycin once per two weeks. (Albeit the last thing I heard is that Dr. Blagosklonny is now taking daily doses of 2mg.) So indeed I chose to space subsequent doses out more, with the hope that the Rapamycin would be cleared from the plasma prior to taking a new dose, as you also mention. After all Rapamycin has such a long half-life. But ideally we would of course test our blood levels of Rapamycin. (Unfortunately I’m not able to do that where I live, but I now finally found a lab abroad where I may be able to test my blood levels of Rapamycin.)

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I recently noticed a possible side effect, one I’ve never seen mentioned previously, namely a mild maxillofacial sinusitis. This causes tenderness below my nose on one side, and congestion at night in that one nostril. I’ve read that this can be caused by a weakened immune system.

But there are other possible causes: I have an upper tooth next to a missing tooth that sometimes gets inflamed. I also have a mild but chronic inflammatory response to mold toxins which causes some nasal congestion and post nasal drip.

There may be no connection with rapamycin, so I was wondering if anyone else had a similar problem.

I’ve been taking rapamycin for 2 ½ years, now up to 7mg biweekly after ketoconazole with no recognizable side effects.

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Nasal congestion was mentioned in another group. The week after taking Rapamycin I usually have a runny nose and am blowing my nose many times per day - not ideal, but alas. After a week usually this doesn’t bother me anymore.

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Although my “effective dose” is pretty high, around 30mg on a 2 week cycle, even if sinusitis is a side effect it doesn’t bother me. So if “bothering me” is the red line for setting maximum dosage, I’m okay. But if it’s a warning that my immune system is weakened to a dangerous level, that is another story.

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“But if it’s a warning that my immune system is weakened to a dangerous level, that is another story.” That is concern I share. I guess only blood work can tell.

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I really would need at least an orthopantomogram and/or small good quality x-rays with the tip of the roots on the affected side

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Thanks. Yes, I see now it would be necessary to rule out other possibilities before concluding that my symptoms result from a weakened immune system. And even then, as Sash pointed out, I need bloodwork to confirm. Because my last report showed that WBC had dropped to 3.8 and LYMPH% to 22, I think I will reduce my dosage for now. And with my next dental appointment in 2 weeks, I can get a better sense then of the role of dental issues.

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My WBC is lower without Rapa. I think that is linked to Copper and Alcohol (when I drink I drink a lot - and am drunk ATM), but although Rapa reduces WBC (I think with a dip about 8-10 days after taking it) it is not the only issue.

In any event I have put in a strategy to increase WBC. I was initially intending to only take Rapa every 4 weeks, but I will try first to get my WBC up and then see if the same things happens. I have about 5 more experiments to perform in the next month anyway.

LOL. What exactly is your strategy for increasing WBC?

Copper supplementation. This week I moved from 2.5mg per day to 7.5 because my copper levels had hardly moved. In the past I used to eat a lot of chocolate which is high in copper, but when I dropped heavy carbs I also dropped chocolate.

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Thanks for that information.
I am guessing that when my physician recommended supplemental zinc at the beginning of Covid, this resulted in some copper deficiency and lowered WBC. So I’m going to cut back on the zinc and supplement copper til WBC returns to normal.

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If it were me I might try supplementing copper without reducing zinc, but first I would need to know how much zinc. Zinc is a trace element with a finely balanced range of ideal availability.

I’m taking 30mg Zi supplement plus I get a little (12 mg) in my multivitamin.

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The hard part to assess is what you already get in your diet. Its worth making a guess at this. I know of bad responses to relatively small amounts of Zinc eg 40mg.

Looking at this:

There are problems that can arise at 100mg+ per day. Different people have different responses and there is some zinc in various foodstuffs. The linked report has an RDA of 15mg.

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Consider Jarrow brand “Zinc Balance” (15 mg zinc + 1 mg copper).

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So it seems I’m somewhat sensitive to the amount of Zi I’m taking. Jarrow considers proper balance to be 2mg Cu with 30mg Zi, so I am ordering a 2mg Cu supplement. That might be sufficient without having to cut back on zinc. Thanks for the help.

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