#8

I actually was thinking about starting a thread about Rapa and PCP’s. Very few physicians are going to know anything about Rapa, especially the way we take it. Unlike others here, I don’t think physicians should know much about Rapa. This is still an unusual, unproven, unapproved use of a medication with potentially serious side effects.
But don’t assume that the people posting here are experts either. A bit of Dunning Kruger effect on the internet. Take it all in and determine what is your best bet.
A little searching and you can find a telemedicine option for advice I think.

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#9

An insect bite developed out of proportion after 1 week of starting off label rapamycin with a trough level of 1.9 at the time. Interestingly my preexisting neutropenia was improving on rapamycin but sensibly stopped rapa for 1 week while on antibiotics and restarted after resolution of infection. I think commonsense and an eye on blood count and rapa levels is required during infections. I’m a 54 year old surgeon who is taking it for autoimmune condition alternate days. So not quite a longevity indication…

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#10

Do you have neutropenia or leukopenia or both?

#11

Thanks for interest. My unnamed autoimmune condition results in selective mild neutropenia during flares. I was on methotrexate for 20 years and rather than fixing it wit prednisone as I usually do, I decided to change tack and stopped methotrexate and started rapamycin 2mg alternate days with low dose prednisone at 5mg for the initial 3 days mimicking renal transplant but at a much lower dose without the loading dose. 3 weeks on doing well for now and keeping an eye on neutropenia and leukopenia. I get that I will be suppressing mtor2 over medium to long-term but at this stage I want the immunosuppression (despite the mild neutropenia). My plan is to convert to longevity pulse dosing weekly after maybe 6-12 months having fixed the tregs and stem cells somewhat (if thats possible with my condition which has been going for 20 years since flu vaccine triggered periodic fever manifesting with myocarditis).
All this is very much experimental but it seems my several rheumatologists do not have better option than carry on methotrexate with prednisone as needed.
I have been on nmn and senolytics for 5 years and now stopped nmn to give rapamycin a proper shot.
If this works I would have fixed both a stubborn autoimmune condition and improved longevity.
I would be interested to hear others experience with autoimmune disease.

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#12

Yes, would love to hear about this! I’m waiting for ordered rapa to arrive to start treatment for ankylosing spondylitis with my gp (he gave script but non pbs script to expensive to fill). It’s experimental based off my research but am not sure what dosage to start. I also need the mtor 2 suppression to get my disease in remission. What is the difference between 2mg every second day and 1mg 6 or 7 days a week?

#13

There’s a paper on alternate day dosing in rheumatoid arthritis where they gave patients rapamycin 0.5 mg alternate days with concurrent lower dose prednisone aiming for a very low trough rapamycin level of 2. They found over 6 months they were able to reduce the dose of prednisone and improve symptoms as well as the immune profile of the disease. Rheumatoid Arthritis is also autoimmune but the applicability to our conditions is a bit of a guess. I don’t usually take prednisone so I quadrupled the dose and am checking my blood count and trough levels regularly. My main concerns are to avoid neutropenia and not to get my trough levels above 5. I don’t believe we need transplant rejection level of immunosuppression but neither should we be allowing a wash off like longevity. Thats why I settled on alternate day dosing for now which should create a bit of a wave form in the peak trough levels and delay the mtor2 inhibition as long as possible before finally converting to a weekly longevity dose having “fixed” the immune profile of the autoimmune disease somewhat. All that is guess work. You may take daily or alternate day1mg along with prednisone like the RA study and use the rapamycin to reduce your need for other drugs as well. Whatever option you take make sure to monitor blood count, hba1c, lipids, trough levels, renal function I would say. Good luck.

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Rheumatoid arthritis (RA) and rapamycin
#14

Thank you! When you say trough level may I ask what you mean - how are you monitoring that - by bloods? What is the test for that? Thanks for the reply :slight_smile:

#15

Looks like I’ve got autoimmune pancreatitis (AIP). I’m just ramping down from a 7-week prednisone trial to see if that controls my symptoms - mainly elevated liver enzymes. If so I’m looking at long-term use of steroids and steroid-sparing agents. Like you, the prospect of using rapa to deal with the autoimmune problem while also getting other benefits is attractive. As an MD, what is your opinion on the potential anti-cancer benefits of rapa? That’s my main interest. AIP is often misdiagnosed as pancreatic cancer - that happened to me, they didn’t rule out the cancer until 4 separate biopsies were taken, yowch.

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#16

Rinvoq is the drug the rheumatlogist wants me on and the possible cancer/heart impacts are very offputting, particularly post DMX; I though rapa had a similar but smaller cancer risk.
My Mum had AIH, difficult to diagnose as seronegative and liver biopsy was needed, she’s on low dose imuran for life having quit the long term low dose pred.

#17

You can check trough level of sirolimus just before your next dose but what you do with that level is another question.
Transplant patients aim for 10-15 but longevity weekly dose trough level should be negligible as it is allowed to wash out deliberately. For the autoimmune off label low trough level below 5 to support other immunosuppressants is probably the way forward. In rheumatoid patients they aimed for 2 which is what im aiming for but may increase if I don’t respond. Every condition is different, every persons response is different…

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#18

Im not a rheumatologist so much of this is guess work. You should be trying out different antioxidants, senolytics, nad boosters (intermittently) and yes why not rapamycin as above.
Nad boosters are particularly good at supporting liver such is in fatty liver and may have positive effect on enzymes. I don’t particularly understand how pancreatitis affects your liver function but it will lead to malabsorption and diabetes if uncontrolled.

#19

Thank you that’s really helpful. Are you worried about glucose intolerance being an issue on alternate day dosing?

#20

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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#21

@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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#22

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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#23

“I was on Rapa Nui in April, literally looking into the crater where it was discovered”
I am jealous. :slightly_smiling_face:

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#24

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.

#25

You should go. Stunning, inspiring, message me if you want details on where to stay!

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#26

Please share. I’m sure many of us would like to go there at some point.

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#27

https://www.explora.com/explora-lodge-easter-island/

A pilgrimage!

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