Yes. Indeed. My HbA1C increased slightly from 38 to 39 in 1 month despite low sugar diet and berberine. I am going to start metformin on days I dont exercise.
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@Nebil, I have psoriasis and ‘maybe’ psoriatic arthritis. I say maybe because of other health complications, and lazy rheumatologists. I was on Methotrexate for 8 years and experienced diminishing returns; pain, flares, dry, fragile skin, fatigue, etc.; I had a bad reaction to prednisone and grew frustrated by doctor’s lack of interest in alternatives. More methotrexate, more prednisone!
I was on Rapa Nui in April, literally looking into the crater where it was discovered, and had a light-bulb moment (cue the woo-woo music) regarding trying rapamycin on my own, as an immune modulator, trial of one. Reign in my auto-immune condition and maybe add in some positives as well?
I slowly worked up to 4mg a week and felt pretty bad, just too many side effects for someone who was already sick. I’m now taking 1 mg daily; am going to try @desertshores protocol: 7 days on 7 days off… already on the 1 mg a day dose I feel much better.
I have a stack of supplements I’ve been fiddling with for years, and will continue to do so with the goal being refining them to the most useful. No one like taking 30 pills a day…
There’s a lot of fear on the forum about rapa’s immune suppression; but what is methotrexate but an immune suppressor? Not to mention prednisone! People are put on these powerful drugs for life and accept it like sheep. Baaaaa, humbug.
I live in Africa, surrounded (kind of, I live on an isolated ranch) by poor people with active TB and gawd knows what… It’s a middle-income country, so good docs, just not enough of them, and I’ve survived Africa, COVID, vaccines and boosters, lots of travel. I drink untreated water from a (deep) borehole and get regular minor injuries based on lifestyle (conservation, wild animals). I recently attended the annual Kasanka, Zambia fruit bat migration (10 million bats converge on a small forest) and people said - Oh, bats! Aren’t you concerned about viruses - ??? Yeah, no, it was one of the most amazing experiences of my life. Definitely worth dying for. Highly recommended.
Frankly I was more concerned for my health risks last March in Bolivia… So poor, lots of malnutrition, cholera, etc.
I don’t see why rapamycin would have more infectious risks than standard immune suppressants. My docs like to say that methotrexate is a safe drug because we’ve been using it for 50 years and we know what to expect. Except for those pesky diminishing returns. What good is a ‘safe’ drug that doesn’t really work?
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I admire your fearless lifestyle. I think this is the exact point of longevity. What good is living long but obsessed with risk constantly.
We are clearly trying to alter diminishing returns and also importantly increasing susceptibility to disease from blunt immunosuppression.
Like you I want to believe rapamycin, regardless of side effect potential, is a two in one autoimmune fix and longevity boost.
I think for autoimmune we have to take daily or alternate day dose for a period (6 months?) before attempting conversion to weekly longevity dose. I started 2mg alternate days based on severity of my illness but may have actually made a mistake stopping methotrexate abruptly because now had a minor relapse in fever. So started 5mg methotrexate weekly today and 4mg prednisolone daily until the fever subsides and methotrexate/rapa kicks in. One of the advantages of rapamycin is reducing the dose of other conventional immunosuppressants over time with increase in t-regs and immunomodulation. I am not sure I can pull it off after 20 years but worth a try. I also take liposomal senolytics curcumin quercetin fisetin resveratrol apigenin … cyclically and until recently nmn for 5 years.
My recommendation for you is to keep an eye on your sirolimus trough levels, everyone responds differently and keep an eye on your neutrophils, liver and kidney function, fasting glucose and lipids. Experimenting is fine as long as you monitor things.
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“I was on Rapa Nui in April, literally looking into the crater where it was discovered”
I am jealous. 
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It sounds like we’re on the same path. I reduced my methotrexate more gradually as I ramped up my rapa dose. I’m very sensitive to meds and it worked for me. Like I mentioned in the previous post, I felt sick on a weekly dose of 4 mg but feel fine on 1 mg a day. And yes, I realized quickly that the weekly ‘longevity’ dose didn’t work for me. Maybe, as you suggest, 6 months from now.
We are on similar supplements… I had blood tests done before I started rapa so I have a good base line. I’ve had regular testing for years because of the mx and always normal results. Investigating if I can get rapa trough tests here… but travel enough that I can get those tests elsewhere if needed. You CAN pull it off. I don’t think we’re more susceptible to disease on rapa than more conventional immunosuppressants. Just less data and fewer docs to guide us.
You should go. Stunning, inspiring, message me if you want details on where to stay!
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Please share. I’m sure many of us would like to go there at some point.
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WOW, Cara! You certainly are living life to it’s fullest! I will have to settle for living it vicariously through you and your adventures…
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Definitely a visit to Rapa Nui is on my bucket list… might get to it when I hit 100 years.
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Love your optimism! It’s definitely a must go destination. Just wondering how many hours it takes to fly there. I once traveled to the Marshall Islands (Bikini atoll) in the Pacific Micronesia - took me 20 hours with 2 stops from the US.
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@LaraPo, yes it’s a haul. We flew to Rapa Nui from Santiago, Chile. If you mix it up with San Pedro de Atacama, Chile (another great Explora Hotel) and Torres del Paine, Chile, it’s an incredible South American adventure. I hope you get to go. The Explora group focuses on activity, offering everything from kid-friendly to hardcore bike and hiking trips to vehicle excursions. Something for everyone. @Agetron will be doing the 20 mile hike up to the volcano when he’s 100. 
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And add a side visit to Galápagos Islands? (I almost took a trip there years ago but instead went to the Amazon jungle…big mistake)
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Absolutely! As good as Rapa Nui.
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Phase 2 trial just published: Safety and efficacy of sirolimus in hospitalised patients with COVID-19 pneumonia
“hospitalised patients with hypoxemic respiratory failure due to COVID-19 and at least one poor prognostic biomarker, were given sirolimus (6 mg on Day 1 followed by 2 mg daily for 14 days or hospital discharge, whichever happens first) or placebo […] There was no difference in the proportion of patients who were alive and free from advanced respiratory support measures in the sirolimus group (n = 15, 83 %) compared with the placebo group (n = 8, 80 %). Although patients in the sirolimus group demonstrated faster improvement in oxygenation and spent less time in the hospital, these differences were not statistically significant. There was no between-group difference in the rate of change in serum biomarkers such as LDH, ferritin, d-dimer or lymphocyte count. There was a decreased risk of thromboembolic complications in patients on sirolimus compared with placebo. […] Sirolimus treatment was safe and well tolerated but was not associated with reduced risk of disease progression in hospitalised patients with COVID-19 pneumonia.”
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Nebil, are you able to share your experience over the last six months and whether this alternate day dosing regimen has worked as you hoped? I have a similar condition (recurrent viral myocarditis first triggered by the Covid vaccine) and 6 mg weekly dosing is not working well for me. I’m thinking of taking 2 mg every 3-4 days.
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Hi there. It seems we have similar causes of autoimmune myocarditis. Mine was from flu vaccine 20 years ago and it stayed with me since. I was needing increasing doses of methotrexate with prednisone high dose for breakthroughs. So not great. I also took nmn for the past 6 years but I think it periodically activated the disease. However not knowing what else I could do I persisted with nmn intermittently. Rheumatology wasn’t much help as they wouldn’t start me on anakinra which could have helped because I wouldn’t allow the inflammation to take hold… all in all failure of conventional medicine. Which brings me to 7 months ago when I started rapamycin.
I read a paper on low dose alternate day rapamycin in rheumatoid arthritis patients who were able to reduce methotrexate and steroid use. They measured trough levels aiming for 2-4 with 0.5mg alternate days. Well I started with 2mg alternate days on empty stomach (no grapefruit) and achieved consistent trough level of 2. I had stopped methotrexate completely which proved a mistake with a minor relapse requiring prednisone so I restarted methotrexate at a very low dose of 5mg weekly again (previously upto 20mg). Relapse went and stabilised on this new regime. Checked lipids and HbA1C regularly and despite careful diet it crept up a bit although not to abnormal levels close to upper limits. So I realised I had to go onto weekly dose eventually. In the paper the patients had a 6 month course of alternate dose rapamycin. I stopped alternate dose after 4.5 months and moved onto 6mg weekly dose which Ive been on now for 3 months. All very good. HbA1C dropped again and so did the lipids but I wanted to lower lipids further anyway so started Atorvastatin 20mg at night and Ezetimibe 10mg in the morning. Worked like a treat. Halved cholesterol! My CRP is all time low 0.4 and I feel great. I also keep an eye on my neutrophil count which is on the low side with my autoimmune condition anyway. That hasn’t changed but Im hopeful rapamycin will wake up the t-regs as per rheumatoid paper.
I also do bunch of other stuff but Ive always done that; no processed food or simple carbs as much as possible, occasional fast, now taking higher dose liposomal nmn 500mg without immune activation, apigenin, omega 3 1g, tmg, taurine 1.5g.
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Nebil, thanks so much for sharing, and I’m glad to hear you seem to be doing better. I read the same study on rheumatoid arthritis, as well as the Mannick flu shot/immune study, both of which showed improved immune function with very low daily or alternate day dosing.
How has your myocarditis been since completing the 4-5 months of 2 mg on alternate days? Have you had fewer and/or less severe episodes, or no episodes?
There’s a drug called azathioprine that’s often used as a first-line treatment for chronic myocarditis (along with prednisone), and for rheumatoid arthritis, which has some mTOR inhibition properties. There’s also some information out there referencing sirolimus as a possible treatment for myocarditis, though it’s not common and is never used alone. But those things, along with the two immune function studies, make me hopeful that rapamycin can work for this condition.
I’ve also experienced a total failure of conventional medicine. My research led me first to metformin as a possible treatment for long Covid and for indirect mTOR inhibition, and then to rapamycin. Metformin did help alleviate some of my cardiovascular symptoms when I was at my worst, but it was not enough. I am currently taking both. I have also made signficant lifestyle, diet and supplement changes.
I started the rapa in November at 2-4 mg weekly, then had one myocarditis episode in early February. I then went to 6 mg weekly and had another myocarditis episode earlier this week. Both seemed less severe that prior ones and I did not go to the hospital. Now, I plan to take 1 mg every other day or 2 mg every 3-4 days in the hope that it will more effectively restore my immune function and prevent another episode.
Here’s an infomative Rapa News thread on daily dosing if you’re interested:
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Good luck Daph I think we are on the right track with rapamycin as adjunct in autoimmune myocarditis. I had no relapses with my approach of 4.5 months alternate day then weekly.
One thing I am careful is to take just rapamycin one day a week at least 3 days apart from my weekly methotrexate. Both are now weekly for me: Sunday and Wednesday. I take my all other supplements the other 5 days.
I would be cautious with Metformin. Better low sugar diet instead. Metformin story is still not clear and it certainly compromises muscle growth in exercise.
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That’s great news, Nebil.
I’m not taking any other meds for my myocarditis except metroprolol. I have not found a cardiologist or rheumatologist who understands the process well enough to treat it, though I haven’t pursued it too aggressively since there don’t seem to be any great treatments without side effects, my relapses haven’t landed me in the hospital in more than a year, and I am hopeful that the rapamycin will be enough. I do hold most of my supplements on my rapamycin days and take it 2 days apart from curcumin. I will probably stop curcumin completely while taking the rapa every other day.
The metformin was the only thing that helped my symptoms early on when nothing else did. Unexpectedly, it also made it easier for me to lose weight with diet and exercise. I do resistance training to build and maintain muscle. I may stop taking the metformin at some point down the road, but for now, I and my doctors feel it is relatively low risk.
Thank you again for sharing your experience – it is much appreciated. I hope you continue to be well.