Side Effects of Rapamycin (part 2)

Do you have any pictures of the skin lesion? Facial edema?

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Yes, will send ny private message.

Left cheek? A small red bump?
Interesting that ankles swelling is not that common- just you and I.

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Could it be that it affected your kidneys? Edema in ankles is the first sign that kidneys aren’t happy.

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Well, my kidney score eGfr was 70 which is fine. Under 60 is abnormal. I do get a few random bumps on my dosing sometimes.

Only had swollen face, clogged eye glands and swollen ankles at higer doses 38 ng/mL and up. At current 12 ng/mL no issues. And at 6mg pills (no GFJ) for 1 1/2 years - no issues.

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I have noticed an interesting side effect. I have been in a washout for the past two weeks as I had minor skin surgery and I didn’t want the Rapa to affect the healing. A few days ago, I accidentally bit my lip and a canker sore began to form (this happens whenever I bite my lip by mistake and happens every now and then).

What was different this time is that the canker sore never grew. In the past, they would always get 2-3x bigger than the initial injury and be painful and sore for several days. This time, the canker sore stayed small and then healed up much faster than in the past. So, it seems that my body is healing from canker sores MUCH faster than in the past when I am not on Rapa. Also, I had two pre-canker sores (little blisters) on the inside of my mouth this past week that never turned into canker sores. In the past, they always did.

It seems that Rapa is having a positive effect on my oral health in regard to canker sores. Anecdotally, many people who take Rapa appear to have canker sore problems earlier on but not so much as they continue taking Rapa. This may be due to positive changes in our bodies which allow us to deal with canker sores better and faster. Just my personal observations.

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Today I had an unexpected result. I have been complaining that rapamycin has raised my lipids. Several doctors on Youtube and Twitter claim that a Lipoprotein (a) test is much more significant. I hope that they are right because I decided to get an LP-a test. The results came back today and I was pleasantly surprised. Unfortunately I have never had this test before so I have nothing to compare it with.

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Mine always shows <15 and they don’t show the units anywhere. I’ve used like 3 or 4 different companies over the years.

Linus Pauling thought lp(a) should go up as vitamin C is less available (if you’re deficient). Probably a significant genetic component as well.

Lp(a) is genetically determined and stays the same. This is according to Dr. Peter Attia and all his work on ApoB, etc.

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70 is a great number! Unfortunately mine is 64. But I’m working on it.

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With this in mind, I wonder if there are less side effects/infections from those dosing every 2 weeks (as opposed to once a week)?

I also wonder if the longevity benefits may be better, all things considered, on a Every Two weeks dose schedule? I noticed Bryan Johnson takes his doses every two weeks.

I wonder if those that have healthy lifestyle/diet/sleep, etc. (more robust immune system) are less likely to catch a cold or have other side effects like rashes, when taking rapa.

Makes sense since most of these side effects are probably coming from the immune supression.

I wonder how we can make sure we’re not supressing the immune system to the point where we’re increasing the risk of things like cancer, yet still benefiting from the benefits of rapa.

I’m reading these posts in chronologial order, so sorry if this has come up later in the discussion.

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How did this work out for you? Turned out to be the Metformin?.

New to the forum and apologize if you’ve mentioned it elsewhere.

Rapamycin inherently delays/prevents cancer and is FDA-approved to treat some cancers. See the latest Dr. B meta-analysis discussing Rapa’s affects on cancer that he posted today. So, I doubt there would be any cancer risk from taking something that prevents cancer.

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It could be - but right now we have no data that suggests that dosing every two weeks is better than one week - all we have is data on weekly dosing. There is a lot of personal variation in terms of response to rapamycin (as you can see by reading this forum for a while) - so I think its good for people to test different levels and schedules and find what works for them.

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I noticed some pretty bad side effects at 3mg + 1 whole red grapefruit +EVOO dosed weekly.

  1. Heart rate elevated by 10bpm
  2. HRV down by 30
  3. Suspected hypercortisolemia (super anxious/stimulated/wired 24/7).
  4. Nausea during weight lifting (started 15 mins into the session - had to quit early)
  5. Raised non-HDL and TC

Stopped the rapa and all symptoms went away.

Even with these symptoms I persevered with this dosage regimen for 6 weeks - I was kinda thinking (hoping??) that I just had a virus or something. I was reluctant to blame the rapa.

I feel like I must have been achieving an extreme blood level. Maybe I am also a 6-7x absorber with GF + EVOO. I am also sure I read that younger people + insulin sensitive also have higher absorption??? (I am 30y/o + very low fasting insulin).

All symptoms subsided after 2 weeks or so after I stopped dosing.

I am still on a washout until I can get another lipid test to get my baseline again (1 more month). Then I will reassess starting again with a low dose (while also monitoring labs including lipids).

For me: more is clearly not better. The side effects were severe.

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Did you ramp up to that 3mg + GFJ and EVOO level, or did you just start at that level and dosing protocol?

Did the side effects only start at that level, or did you see them at lower levels?

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It seems like people are better able to tolerate Rapa with a slow ramp up. Your body adjusts to it. That’s what has worked for me.

Earlier on I did experience nausea when I dosed and exercised on the day of dosing by cycling or hiking. I just schedule dosing and exercise on different days and that seemed to work. As my dosage increased over time, the nausea went away. As for blood sugar and lipids, I need to schedule some more blood tests to get definitive answers.

Almost all of the positive effects I have felt from Rapa have been noticed during the washout period between doses.

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I slowly ramped up. Here was my approach.

Week 1: 1mg + EVOO
Week 2: 2mg + EVOO
Week 3: 1mg + GF + EVOO
Week 4: 1.5mg + GF + EVOO
Week 5: 2mg + GF + EVOO
Week 6: 3mg + GF + EVOO - then stayed at this dosage for around 1 month

Difficult to say exactly when the side effects started - I should have tracked more closely my thoughts and feelings. 95% sure it was dose dependent though as I recall the time period in my head. Definitely everything is great since I stopped taking rapa.

I was kind of thinking it was something else because many of my symptoms not mentioned in this thread. The end reason that got me to stop dosing rapa was my lipid results. Havn’t yet checked my lipids, but every other side effect vanished now.

The elevated heart rate, low HRV, exercise intolerance situation was really puzzling to me - I don’t believe I have seen this listed as a side effect profile for rapa before?

Interestingly, my joint health is worse during the washout period - but was great on the rapa (despite everything else being worse). So that points to some inflammation being attenuated at the time.

Anyway, now I am rambling. I wonder if anyone shares a similar experience. I am looking forward to sharing more data this year as a tinker some more

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Thanks for sharing. I was getting nausea on every lifting workout - not just on dosing days (I lift 4x per week). Interestingly, I wasn’t getting nausea during my zone 2 cardio (+ zone 3 running). In fact, I ran a 1:44 half marathon while on the high dose - but afterwards I was absolutely destroyed and it took me a while to recover - normally I would be fine the next day (apart from a bit of muscle/joint fatigue).

I do feel good at the moment (anecdotal) - not sure if this is because washout or because I am just having a good time in my life right now (I have a lot of positive things happening at the moment - and my mental health greatly impacts my physical wellbeing for sure).

Side note: My blood glucose was normal on rapa - no change to post-prandial or fasting responses. Just lipid abnormalities.

I think everyone responds differently to all pharmacology/lifestyle/nutrition/etc. It’s interesting to hear your experience as well thanks so much for sharing

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