Side Effects of Stopping Rapamycin

I’ve been on Rapamycin for a long time, almost two years now. Whenever I have an infection, wound, or surgery, I stop Rapamycin to recover. Well, this time around I had a pretty painful canker sore (I bit my lip while chewing) and it took two weeks to recover. However, after about 10 days since my last dose (4 mg + GFJ), I noticed two distinct side effects:

  1. Intense bloating at night. I was so full of gas, it felt like I was being punched in the stomach constantly. The only relief I could get was by taking a squatting position which made it hard to sleep. I couldn’t fart to save my life though. This was very uncomfortable and happened 3 days in a row with no noticeable change in diet. After taking my Rapamycin dose on day 4, no more bloating. I have never experienced this before in my life! (Acarbose was close, but I could always fart it away. This couldn’t be.)

  2. Weight gain. I have been holding steady in a 4 lb range for two years now. During these 3 days, I punched through to be a lb above my upper range.

  3. After taking my Rapamycin dose, the euphoric fatigue returned.

I wonder if 1 and 2 are due to a microbiome change? Maybe some gas producing or weight gain bacteria had been over colonizing but being held in check by the Rapamycin?

I guess once you’ve been using Rapamycin for a while, your body doesn’t want you to stop!

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@DeStrider Interesting how different my experience with rapa has been from yours. The euphoric fatigue is a mythical feeling I’ve not felt. And when I’ve stopped rapa for 2-4 weeks I always feel great. Rapa is hard on my body in the short run. I keep using it for the medium term immune system improvements (which I have received: joint pain, allergy relief) and the hoped for, possibly untrue at my dosing, long term benefits (life extension stuff).

I wonder why the effects are so different….

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Ouch. Has this happened enough times that you’re sure it’s the Rapamycin? I don’t get the euphoria either. My “withdrawal” symptoms, if it’s real, occurs about 5-6 weeks after my last dose and I just have sore joints as if I suddenly aged 20 years.

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This is the first time it’s happened, but it coincides perfectly with the Rapamycin dosing. I’ll see if it happens the next time I stop for some reason.

Another reason for posting this is to see if anyone else had anything similar happen to them and how they handled it.

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When I stopped for one month in February I felt increased inflammation and IBD like symptoms returning. I’ve never been officially diagnosed with IBD fwiw but I’ve had symptoms off and on since my 20’s that I’ve always been able to manage decently with careful attention to my diet. Improved gut health and the ability to tolerate a greater variety of foods (similar to my teenage years) is the main benefit I’ve noticed from rapamycin. I’m currently on a Q21 day dosing schedule and took my dose last night and feel great today.

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When I stop Rapa I also feel great. Never experienced a mysterious euphoric fatigue.

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@blsm IBD or IBS? If IBD, definitely worth getting a definitive diagnosis.

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Suspected IBD unfortunately. I had a procedure scheduled to get it confirmed or ruled out in 2015 and when I was on the gurney with the IV going I was informed that the doctor couldn’t make it due to a car accident. There was no one available fill in so I was sent home with a Coca Cola which I proceeded to vomit up in the parking lot. Although it’s embarrassing to admit this I’ve not attempted to retest. I know I should of course so thank you for the suggestion/reminder!
I wonder if it is waste of time to do the testing when symptom free?

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If it’s Crohn’s disease and asymptomatic probably not important. But Ulcerative Colitis has a significantly higher risk of cancer.

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@KarlT, thank you sir. Whenever I would have flare ups with my bowels in the past I would also have a mouth sore at the same time so it seemed more like crohn’s. I haven’t had this full blown in several years although it felt like it was starting to come back after my 1 month break from rapa in February. I need to get a colonoscopy anyway so your reminder and input is greatly appreciated!

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It has been more than a year that I started rapamycin and I only took 1 break when I got the first dose of the shingles vaccine. No side effects!
I was extremely sick on 2020 with a severe case of Ulcerative Colitis (UC) loosing 35 pounds of weight in 6 months. I had a normal BMI before UC started and all doctors disappeared on me due to covid. I had not choice to do my own research and find a cure on the internet, I only use real papers with clinical data. At the end Indigo Naturalis stopped the UC flare and the bleedings, but I need it something to keep UC under control and that’s when I found Rapamycin:

Rapamycin promotes the intestinal barrier repair in ulcerative colitis via the mTOR/PBLD/AMOT signaling pathway

Every bowel movement is a report card, you definitely know how you did for the day.
I’ve done 3 colonoscopies and the results of the last one where absolutely incredible. The gastroenterologist said to me during the colonoscopy that if he didn’t know I had such a severe UC before he could never tell! And that I should keep doing what I’m doing. He said; don’t stop!
I also added as much fiber to my diet as I possibly could, a bit a time but I should be over 60 grams of fiber per day.
I exercise 3 times a week, I follow a HIIT program and also walk everyday 3 km after supper.
My advice is to look at your report card everyday (to find possible culprit foods, for me Coconut oil so far), add fiber to your diet, exercise and never stop researching!

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@Works4You2 what Rapamycin dosage do you use?

Sirolimus 1 mg x 2 / week first thing in the morning with 1 GF + 1 Tbs EVOO

Does that mean 2 mg once a week or 1 mg twice a week?

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2 mg once a week right after eating a pink grapefruit and 1 Tbsp of Extra Virgin Olive Oil

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