I was in PEARL Study at 8mg 1X a week. I had no issues. I have started back up on my own 3 months later at 2mg. This is week 3. Week one I had no side effects. Week 2 I felt tired and achy the next day. Week three my BP shot up to 156/80 4 hrs after dosing. I felt horrible. That night I started flu like symptoms, or body aches, head ache. The day after I was very sick but BP returned to 108/50 and normal EKG. Day three I was back to normal. I don’t know what to think. Was I just sick? I also have Rheumatoid Arthritis that I have controlled with LDN 4.5mg. For 6 years. I don’t know what to do. Should I discontinue Sirolimus.I have asked my prescriber and was told high BP was not a symptom.
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I don’t know if you saw my post below, but your experience seems a lot like mine. I did PEARL with no issues at all. Now I am going through AgelessRX for my Sirolimus. They started me at 2 mg. I am experiencing fatigue/ flu like symptoms and an alarming BP surge that did subside after 12 hours. I gave up three days this week to being sick. Not sure if it was Sirolimus or the flu. I’m very reluctant to dose up again next week.
Of course, everyone has individual responses to rapamycin, but in over two years of taking relatively high doses of rapamycin, I have had nothing but good results apart from diarrhea when I take too large a dose, no fatigue, no colds flu, or other illnesses.
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Thinking mechanistically anything that encourages mitophagy has the potential to cause a temporary fatigue whilst the body’s energy generation is reduced prior to the creation of new mitochondria.
Also if energy levels are increased I would expect BP and HR to be increased temporarily. I think that is what happened to cause my BP to increase. I have ended up with a higher Stroke Volume, but lower mean arterial pressure.
I get diarrhea if I take too much of any medication. Lol.
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New to taking rapamycin. Started 1 mg a week, then took 2 mg and had 1 small canker, went away quickly. Then next week dosed at 4 mg and had several cankers leading me to delay dose at day 7. Took 3mg at day 9 and had had multiple painful cankers that affected my ability to eat and brush my teeh. Using Sensodyne, no SLS. Used OTC Kanka and had Rx for topical clobetasol gel (steroid) to apply with a gauze pad. I am now at 14 days and my cankers are finally gone. Not sure what I will try next. 2 mg a week? Frustrated by my bad cankers. For reference I am 125 lbs and 59 years old.
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Thats a pretty low weight - the average weight for males here is probably around 160 to 190lbs.
You may want to keep it lower for longer (e.g. 1mg or 2mg for a month or two) and only slowly go up by 1mg every few weeks. What is the Rapamycin Dose / Dosage for Anti-Aging or Longevity?
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I agree but also try Lysine and vitamin C. I am just about done with Robbin’s book about copper and Iron and it turns out you really should use like Acerola Cherry vitamin C. Something derived from plants.
Just an idea, take what you want and leave the rest.
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I am having fatigue as well does this tend to ease?
@pmoskie I’m about 120 lbs and have pre-existing autoimmune disease. I’m experimenting with Rapa to see if it can act as a immunomodulator so I can stop methotrexate and escape its unpleasant side effects. My first round (over a year ago) started with 2 mg, the following week 4 mg, then 6 mg and my side effects were extreme thirst, and a strange wired feeling/nervous energy, increased insomnia. I took 6 mg for a couple of months and did a washout as I left for a long trip and it was a convenient time to do so.
A few months later I restarted at 1 mg per day x 5 days a week - based on some comments in this forum linked to papers re a dosage protocol being studied for autoimmune disease. I immediately got canker sores! None at the higher weekly doses btw. I used a strong salt water rinse and they subsided.
I took another long break to trial colchicine (which is contraindicated with rapa) for my autoimmune disease. Trial over, restarted rapa 5 weeks ago: 2 mg, 3 mg, and now 4 mg per week which I’ll remain at. No canker sores, no unpleasant side effects, but no improvements either. It’s all a WAG and there are no answers, not yet anyway. 
I stop most supplements for at least a month when I try new protocols and track my BP, watch my Oura feedback, note my energy levels and joint pain to not muddy the waters of the rapa experience. I’m about to try GlyNac and will report on that in a few months after blood work. Good luck!
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I was experiencing an intensely itchy rash on the tops of both shoulders and on my right knee, and occasionally on the back of my neck, from the sirolimus dosed at anywhere between 2-6 mg/wk - it did not matter. This went on for my first 2.5 months of use. After a lot of research and reading about sirolimus inflammatory syndrome and pruitis sometimes experienced by transplant patients taking daily sirolimus, I got the impression that could be cytokine imbalance, which triggered me to think about a supplement I’d been taking for the last year called Cytokine Suppress by Life Extension. It contains EGCG and Vitexin/Isovitexin. I stopped that supplement a week ago, the rash has disappeared and not returned. If anyone else is experiencing a rash and takes those things, try eliminating them and see if that helps.
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I think it’s possible that the pleiotropic benefits of several drugs, metformin, acarbose, SGLT2-inhibitors, GLP-1 agonists, could have important effects on the microbiome.
I spoke too soon and have to take it back about that supplement together with sirolimus triggering my rash. I’ve been off the supplement for a week and a half and though my symptoms initially subsided, my itchy shoulder and knee rash came back last night and today, 5 days after taking my weekly sirolimus dosage. Last time, it also got worse the day after my sirolimus dose. It may have to do with a cytokine imbalance triggered by the changing levels of sirolimus, but it wasn’t that supplement.
There is some literature out there about sirolimus-induced pruritis and how it’s associated with increased thymus and activation-regulated chemokine (TARC) levels and eosinophils, and other literature about how sirolimus affects keratinocytes (skin cells that are part of the immune system), which produces TARC. In some instances, topical corticosteroids and antihistimates (H1 and H2 blockers) were effective. A topical corticosteroid didn’t do it for me. I took a claritin and famotidine earlier today (as I also did a week and a half ago, with zyrtec and melatonin at night) and think it might feel a bit better. I will have to experiment.
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My only side effects from rapamycin is smelly farts. I fixed that by taking active charcoal pills.
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Maybe those gassy emissions are the toxic waste being released from cells. Hmmmm?
Activated Charcoal… a good solution.
Just realized this myself on my last rapamycin dosing a few days ago. Using Activated Charcoal now after meals post rapamycin.
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Have never had experience with Rapa affecting flatulence (14 years on Rapa). Most likely it’s a bad diet or taking food in the wrong order, or eating foods that shouldn’t be combined in the same meal, like meat and pasta/grains/starch.
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Maybe together with the acarbose and metformin it does something together.
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I take low dose Acarbose, 25 mg, 1-2 times a day, but don’t take Metformin. May be it’s a combination of both that affects you. Acarbose doesn’t give me any side effects, may be because I don’t eat bread (wheat).
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I do love my bread and rice. Hence probably why. I’ve to tighten my diet. Or have them on day 5 to 7 only.
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