Thanks for your reply. Yeah, I think at least having a decent amount of muscle has helped from the glucose disposal point of view. I’ve experimented with a continuous glucose monitor, and it does generally seem very stable and doesn’t spike in response to most things.
I’ve never had a CT or CCTA because I don’t know if it would give me actionable information. I’m already lowering ApoB to around 40 mg/dl. So there’s not too much else available in terms of risk reduction.
Hi. Welcome to forum. Also medic. General Surgeon. Strong family history of ischaemic heart disease. Age 56. My lipids weren’t particularly up but Im on miniscule dose 10mg atorvastatin and 5mg ezetimibe to hold the sweet spot. Your age you can go low but when older no survival benefit and screws up your hormone production.
On rapa. Take it. I took despite autoimmune myocarditis and helped me come off methotrexate after 20 years! Had 7 horrible skin infections on it but being a medics took the abs and antifungals. Im a bit netropenic anyway from 20 years on methotrexate so significant risk with rapamycin. Stopped after a year of rapamycin but will restart gently 3mg 2 weekly soon as neutropenia allows.
Well, I didn’t plan on turning this into a “blog” or anything like that, but I figure I might as well update it with a few major things.
I had some blood tests done at week 8, and I do see some Rapamycin “signature” changes, like reduced RDW%, slightly reduced WBC and smaller MCV. HbA1C didn’t move. However,. so far, I didn’t actually notice or feel a single thing. Nothing is really different in skin, hair, nails, energy etc.
I also had a weird result from a routine carotid artery ultrasound, where there were some dense nodules or streaks in the scan. I immediately thought “plaque”, and the report came back saying “inconclusive, mild plaque” (weird sentence, right?). However, my doctor looked at it and said he thought it was an artefact of the scan.
So I did the CTCA, and it came back completely clean. No evidence of plaque. Calcium score zero. I have to say, it is a HUGE relief. I almost feel now like having HeFH is a blessing and not a curse, because it clued me into this stuff at an early age. In theory, with my ApoB being around 50mg/dl, it should be very difficult of me to die from a heart attack or thrombotic stroke. I should have better survival chances than if I was an average dude with 80-100mg/dl.
They also CT’d my carotid artery, and there’s nothing there at all. So this ultrasound scan seems to have been some anomaly.
Still have that pesky Lp(a) though. At a re-test, it was 84mg/dl, which sucks.
Other updates
A colleague of mine, guy, ~42 years old, came and asked me about his recent test results. Dude is pretty tall and skinny, works a lot. Anyway, he shows me his blood panel and it’s LDL-C 220, total 270. He also said he had done a calcium score, and it came back as 350. Yet again proving that you simply don’t know what’s happening on the inside without doing the tests. This guy is likely on a fast track for a heart attack before he’s 70. Even then, he took some convincing to go see a cardiologist. His “normal” doctor just told him to eat less greasy food. Cardiologist prescribed him good old reliable Rosu + Ezet, but my colleague them bombarded me with questions saying he’d read that it raises your glucose and creatinine. Again, it took some work to convince him that a CAC of 350 is just horrible at his age. I had to dig out some of the PESA-related studies, and once he realised he’s literally in the top 1% for CAC in his age bracket, and that CAC represents advanced disease, he happily takes the meds.
Questions:
This thrills me!!! I’m elated for your good news!
If it gives your friend comfort, you can share that my new cardiologist shared he has patients walking around with CACs of 10k who are just fine (for now)… however, in your friends case, this might de-incentivize him, so maybe not 
On your dose of rapa… Of course I have no idea what you should do, but I’ll share we just have no idea what is going on under the hood unless you test.
Do you have access to running those labs in the UK?
My story is I recently met rapadmin and he was shocked I was on 6mg weekly when seeing how small I am irl. He encouraged me to get tested with the thinking I might be taking too much. As I posted elsewhere here, it turns out 6mg was not enough for me!!! I’m now taking 8mg per week and have since tested again and am now in the sweet spot. But then, @CronosTempi, who is larger than I am, also tested and his numbers showed higher than expected values. Wild West!!!
I started rapa at 3mg. Three reasons. One, there’s a claim by a rapa researcher that a low dose of rapa had negative health effects from his research (if you search the threads, you should find it). Two, the PEARL trial high dose was 3mg for about a year and had no negative effects, the overall conclusion was that the dose is extremely safe. So I figured, rather than risk a possible negative with a low dose, why not go for a dose of 3mg that has been shown to be safe? Three, I saw zero evidence anywhere that a slow ramp up from 1mg was advantageous in any way. I started at 3mg rather than 6, because just in case of some freak allergic or very negative reaction I wanted to make sure I wasn’t at some max dose.
However, I was on a 6mg/1-week dose for seven weeks before I felt anything. What I then felt was a strong attenuation of exercise related aches and pains in my joints and tendons. As far as sides, a few pimples (3-4) in the face area and scalp.
When I tested myself, at 49-50 hours post my 6mg dose, I got 5.6ng/mL, which is apparently highish according to Dr. Fraser (on this site).
If I were you, I would go higher dose, based on the PEARL trial. Because in that trial, the 3mg dose only showed positive effects (on musculature) in women, and zero effect on men (possibly mediated by body mass). I would definitely get tested though to see what levels you get. Initially I intended to ramp up to 8-10mg once a week, but when my results came high at 6mg, I’m staying with the dose and not going higher.
Also, it seems that for younger people (30’s-40’s), they don’t experience subjectively any effects from rapa. Perhaps understandably - after all, for example, younger people will rarely have exercise related aches and pains in joints, that comes with age, so rapa doesn’t have a chance to perceptibly manifest benefits.
And I personally (just my choice) take my dose on an empty stomach. I don’t want to think, calculate and speculate on what concurrent EVOO, GFJ, or food does to my rapa absorption. Just rapa on an empty stomach after an overnight fast. I want to know the pure rapa effect and nothing more, no confounders. YMMV.
50 mg/dl seems still a bit high in my opinion, usually the opinions among people is that 30 mg/dl is the threshold for laying down no plaque. 20 mg/dl LDL-C has benefits on atherosclerosis over higher.
Fair point. My latest results have my LDL-C at 32 mg/dl (didn’t measure ApoB, but it’s always a little higher than LDL-C). I still have bempedenoic acid left on the table, or increasing my Repatha (currently using 140mg once per month, which could be increased to bi-weekly).
Thanks for sharing. Unfortunately I couldn’t find it.
My logic was that I’m 39 now, figure I’ll (hopefully) be taking this for a while, so starting low and working up probably isn’t harmful in terms of missing benefits. And yes, my logic was similar - to start low and make sure no sort of obvious negative effects, allergy etc.
I think we’re obviously working in an area where there really isn’t evidence of anything. Even the 6mg/week from thing is mostly from the Mannick paper which is 10+ years old at this point and was carried out in older people.
You are right though that I should probably try to find a way to do blood tests for the Rapamycin level, since there seems to be so much difference in the absorption between individuals.
And I suspect you’re right about subjective benefits perhaps being less. I still get sore from working out and stiff joints sometimes, so maybe that’s something to look for improvement.
And I do also agree with you about taking the dose on an empty stomach in principle. However, Rapa is pretty ‘inconvenient’ and expensive to get. (I’m using genuine Rapimmune from a pharmacy which sells to me under-the-counter, and don’t want to burn through massive supplies of it.
Haha, thanks for the kind works! And yeah, probably best not to de-incentivise him.
As for the Rapamycin level blood test, I am not sure - I’ll need to find a place to get it done. I agree with you that it’s worth doing because apparently there’s huge variability in how people absorb it, as you illustrate nicely!
This is an incredibly important post. Thanks for sharing.
I gave my lipid panel and other biomarkers to ChatGPT and it said that I achieved excellent results re my lipids and do not need to take anything even for management. So I dropped ezetimibe and atorvastatin and feel great.
I think it’s dumb to be on a statin with LDL 60 and APOB 42 and suffer from joints pain. I’m also on a healthiest diet and exercise daily. So how is it dumb? Want to explain? And btw, my fasting BG is 79, being on Rapamycin. What are your numbers?
Time passed and my numbers improved!!! Happy for me?
In Dec 2022, my LDL was 194
In Dec 2023, it was already 95, Apo B 109
In June 2024, it was 78, Apo B 79
In Sep 2024, it was 69, Apo B 66
Now LDL is 60, Apo B 42
It’s a result of being on a statin, ezetimibe, pantethine, psyllium husk, diet. I think I deserve a break from statins! Will closely monitor it though and retest in 6 mo.
Wow Lara, the LDL 194 is obviously terrible, but those latest tests are some great numbers!
You didn’t ask for it, but my opinion is that there is no such “one size fits all”, (like the people who want to put statins in tap water). I think if you feel terrible on the statins, then it’s not compulsory to take them, and it’s not stupid to stop. But, I do believe (and all the evidence seems to say) that the LDL-C and ApoB numbers are still very very important and you want them to be low - and that can be achieved in many ways. Obviously in your situation with a kidney transplant, you’re going to be more mindful about potential side effects, toxicity etc than the average person. Thus, your evaluation of risk and benefit would be different than others.
Another thing I’ve learned is that individual responses vary massively. For me, drastically changing diet did almost nothing, and statin monotherapy did nothing. But some people take 10mg atorvastatin and their LDL-C drops 50%. Some people cut out fried food and their LDL-C drops 50%. So if you’ve found something which works for you and gets you the numbers you’re happy with, that’s awesome. I’d definitely be curious to know how your numbers change if you drop the statin and ezetimibe (it’s not clear from your post at which time you dropped them. If it’s between Sept 2024 and now, that’s amazing!)
I dropped them 3 days ago after my very last lipid panel. I’m also curious to see what will happen with my numbers in 6 months. I will continue Pantethine, psyllium husk and chia, and my vegetarian diet. I also hope that my joints pain goes away.
Gotcha. When you do test, can you please share them? I’m really curious.
I definitely will share the numbers.
You may want to consider just keeping the ezetimibe as most side effects come from the statins IMHO.
I may try that. Want to have at least a two week break to see if my joints recover.
Maybe try bempedoic acid + ezetimibe next time you jump on lipid medication? Might have less side effects.
Bempedoic acid is not a choice for me bc of my transplanted kidney. It increases uric acid in some ppl.