THE GOOD, THE BAD and the SAD... Autoimmune Issues, Thoughts?

I took Sirolimus bcs I have a complicated, yet to be correctly diagnosed autoimmune process, as described by the tissue biopsy, that makes my fingers swell into a sausage size state. (RA is ruled out, and the joints themselves don’t hurt). Once they swell, they stay that way up to year, going top and down only a little bit. In all these years I probably had 3 times of the fingers going back to a normal state in these years - but the longest remission was about a month, and then back to sausages. Needless to say, aesthetics aside, it is not fun condition to live with: They itch, they hurt, they are hot and throbbing at times, you get the picture. And is concerning bcs it is a symptom of something larger. Plus I have a lot of other symptoms that accompany this situation. Since I’ve ben around bio-hacking circles for a long time now, I was following the Rapamycin topic until one day I came across some info on its balancing effects on immune system… I instantly got a hunch that I should actually try it - a shot in the dark, for sure, but everything else I tried so far failed anyway. So try I did.

I got a generic Sirolimus 2 mg ($210, 30 tabs, CVS pharmacy in the US).
Decided to take it on Sundays with a meal (containing some fat).
1st Sunday: Took the drug at about 2 pm. Woke up at 2 AM with serious belly ache, racing heart beat, nausea, went to the bathroom once. Decided I had a food poisoning episode. Recovered for 2 days.
2nd Sunday: Took the drug at the same time, about 2pm. This time I I woke up about 2 AM with EXCRUCIATING stomach ache, at level 10 on the scale of 1-10… never felt anything like this in my life, like a bunch of knifes tearing my stomach up! plus nausea, racing heart beat, and a trip to the bathroom. The torture lasted about 9 hours, pain slowly spreading from upper stomach to the lower, until the whole belly area was in agony.
After the pain subsided, it took me 3 days to be able to walk normally: even though there was no acute pain, every step I made resonated into my instants (which we dont feel in normal circumstances), and I couldn’t touch my stomach anywhere - from top to bottom - without feeling the pain.
When my brain finally came back online, I shortly considered another food poisoning, but that didn’t make sense anymore… The timing for both episodes was obvious. I had to think Sirolimus was the culprit
So I went back to the side-effects section of the drug description, and there was the abdominal pain.
But at a low dose of 2 mgs it wasn’t supposed to happen - I plowed through ALL available Internet reviews and forums, no one had this type of severe reaction! Then I found a case study describing approximately what happened to me, and now I know it was Intestinal Angioedema. It also explained why I had the pain walking and touching the abdomen when the acute pain at rest went away. It is potentially life threatening. Sirolimus-induced severe small bowel angioedema - PMC

After I recovered from these increasingly dangerous episodes, I noticed that my fingers were not swollen anymore!!! Sure, they look horrendous, it is like a 300 lb obese person loosing half the weight in a few days, but its been about 3 weeks since the last time I took Sirolimus and they still aren’t swollen!

It turned out my intuition was right - Rapamycin did something that I dont understand to address my issue. Which means not only the fingers, but whatever the actual underlying condition it is that had plagued me all this time. I’ve had this condition for 10 years now. This one random thing that I tried out of desperation actually worked, but it also almost killed me. Which means that I can’t take it again. Even the thought of going through all that I went through that second night again makes me shudder. And I am not a sissy.


  • One thought that I had is that is may be possible that some excipients in the generic version are to blame for this reaction.
  • Another thought - what if I tried 1mg? After all, my main reason for taking it was not the lie extension, although it would be a great bonus, but the immune system function. On the other hand, if it is the Rapamycin molecule that cased this reaction, then I doubt that lowering the dose may preclude it from happening again. Which also means that trying and Rapa analogue is not likely to offer a different result either.
  • Anything I am missing here? What would you do?

Thnx for reading this long saga, you guys can see that I really had to vent, feeling defeated right now.
If anyone has access to any of the knowledgeable doctors/researchers that may be interested in this story or has an idea how to contact them, pls let me know.


Good idea - try 1 mg! Hope it works!


Thnx… judging by how much worse the rain was the second time around compared to the first one, I suspect that the reaction is cumulative and 1mg will not make a difference.

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I am glad that your primary issue resolved itself! However, the side effects you are having with Rapamycin appear to be too significant. You may want to try another longevity protocol such as Acarbose or Canagliflozin. Sometimes you just can’t take something. Good luck!

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I dont think it resolved from 2 pills, it will come back… which is why I am so sad to no be able to utilize it to control this condition. But thank you:))

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It almost cost you your life but you discovered that your enemy is the mtor, recommendation would be to reduce the mtor naturally try:

Reduce protein intake.
Reduce the consumption of carbohydrates.

Meclizine is a mild inhibitor of mtor.
NAC is a mild inhibitor of mtor.


I like this kind of “anecdotal” evidence because having massively swollen fingers (and then having them get better) isn’t something a person can just imagine. It’s a real physical condition that anyone can look at and see.

So crazy to me that someone can have such a horrible reaction to 2mg, while I take 10mg per week and have never noticed a single effect from it. Such a big variation in experiences.


I wonder what is really making you sick. Could it be an undiagnosed infection? Some bacteria, such as mycoplasma, cannot be cultured. It could be the case that many illnesses that we think of as autoimmune diseases are caused by chronic low level fungal, bacterial, or viral infection. Rapamycin changes the way our immune system works suppressing cancers, boosting our response to viruses, and often causing short term bacterial bloom. I get a few zits 2 days after every rapa dose. It is tempting to try various antibiotics in your situation, but you are flying blind and could cause more harm than good. I am not a physician or medical expert of any sort. I suspect that you have already visited many doctors trying to get help. If you are in the US, the Mayo clinic in MN is surprisingly affordable. My wife and I were very impressed when we went there. Dr. Alan Stanley Green (the Rapamycin doctor) in New York could be another resource. He diagnosed my wife’s condition about a year after we visited Mayo. No one else had really figured out what was going on. I wish you the best of luck. Rapamycin is generally a safe drug, but it may be risky for you.


@Kira_Miftari, impressed with the clarity of your report; thank you.

Sympathies on your horrible experience. (Also, respect to you for you following your intuition --sometimes that’s what we have.)

Also, hope the improvement sustains. Please keep us posted?

I have to agree with the folks who say it would be dangerous for you to try it again.

At the same time, I’ve been in similar places, desperately needing health breakthroughs and willing to take chances to get it. If you decide to try it again, my advice would be to divide a pill in quarters–or even 8ths–and try the lowest crumb of dose you can manage.

Yes, I know that the lack of enteric coating makes it less likely to be absorbed and thus less effective, but in your case, being incredibly sensitive, that’s a bonus. (I have substances I can only take in crumb-form, so I’ve been there.)

I hope you find that your health issues are solved by these 2 doses and you don’t have to risk it again. But if you do, keep us posted?


Metformin indirectly inhibits Tor by activating the AMPK pathway - perhaps this could be an option to consider……

The journey of metformin from glycaemic control to mTOR inhibition and the suppression of tumour growth - PMC)%20and%20p53.


Thank you, very good idea! I disregarded Metformin bcs it is considered a “dirty” drug - meaning it does a lot of things, as opposed to Rapa… But now I will start researching all the pros and cons…

PS I also looked into botanicals that are (very!) weak analogues to Rapa (and in a way Metformin) - and Ashwaghanda (which I already take), Ginseng and ECGC came up.


Thank you so much for your thoughtful answer and support…
I do think that I may gather some courage for the experiment that you propose!
Lets say this timeI I get 1 mg instead of 2mg, and cut it up, the all-important coating be damned;-)
If I do go that route, it may be smart to wait for the Rapa effect to wear out, and the fingers to swell up, to establish a baseline.
Then I’d take a 1/4 of 1 mg, and see if it has any effect on the swelling, and if I have any of the gut side-effects at the same time. If nothing happens, repeat in 10 days instead of 7.
Will definitely report back if/when I get there! :hugs:


Yes, this was a very clean experiment, no placebo involved. Even though, as noted in my post, the fingers did go down to normal about 3 times, it took weeks ! for them to do that, and this time. it was almost instantaneous after the second dose.

RE Reaction: Agreed, completely crazy! And I did a lot of research and was not that worried about all the side-effects reported.
I suspect that I am an outlier with Rapa, like 0.1% of a 100%, lol
This happened to me before: as an example, I was what they call “floxed” by taking a Fluoroquinolone drug, a pretty rare occurrence, but ppl who get it may become disabled. I was lucky to have noticed the side effects early.

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"It could be the case that many illnesses that we think of as autoimmune diseases are caused by chronic low level fungal, bacterial, or viral infection. " - yes, makes so much sense, and I am thinking about it too! After all, Rapa was a fungal drug first, and maybe it was not the mTor pathway that worked for me, but its original purpose.
Never thought about the Mayo Clinic - definitely putting it on my list, thank you! as well as maybe visiting such an old experienced doc as Dr. Green, I can imagine the weird cases he’d seen!.. Glad you guys got your answers, such a relief to know exactly what is going on…

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There also Berberine to consider :grinning:

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Oh thats a good one, thank you!

Thank you!
Protein intake is kind of crucial to me as I tend to wither away without an ample amount of it.
Working on moderating carbs, I try not to go over 100gr a day.
I do have NAC but was saving it in case I get sick, but will read up on its effect on mTor. :+1:

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If the reduced Mtor is what helped maybe try fasting? Prolon has a 5 day fast with food you should check out

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Also do not cut pills there is a quite a bit of discussion on here.

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What is your blood serum level of 25ohd?