#1

Question: Share that you take Sirolimus w/ your doc, or keep quiet about it?

Background: I have “advanced Prostate cancer.” (No need for sympathy, I’ll still be alive in 5 years).

I just received a phone call from my doc who was concerned because he knows that I’m taking 6mg of Sirolimus weekly. I also take celecoxib. I’m sure that he found this or something similar:

“Interactions between your drugs - Sirolimus may cause kidney problems, and combining it with other medications that can also affect the kidney such as celecoxib may increase that risk.”

Fair enough—I’ll watch my eGFR. Yet, I suspect that the above warning related to those on silolimus daily, as in anti-rejection regime, not the way we use it as a pulse.

I’ll agree, it is complex. Now I must consider: What effect will the sirolimus have on 35 days of radiation therapy, and what effect will sirolimus have on ADT (Androgen Depravity Treatment) (Ok… Androgen Deprivation Therapy :blush:)

Interestingly celecoxib is (at least in some cancers) anti-proliferative. “Celecoxib, a nonsteroidal anti-inflammatory drug (NSAID) that inhibits the enzyme cyclooxygenase-2 (COX-2), has been shown to have antiproliferative properties:”

But back to the initial question:

Share or not share? Your thoughts?

Note: I’m leaning towards “not sharing,” anymore. My doc’s POV is “be conservative.” My POV is be practical but not necessarily conservative, rather balance the risk versus benefits.

My doc has refused my request to up Metformin ER from 1,000 mg, to 1,500, even though my fasting glucose has responded well to 500, then to 1,000 with plenty of room to go (my morning fasting blood glucose has gone from ~150 to ~125. (And yes, I’ve just ordered some acarbose). It is fascinating that we can simply “shop around,” with suppliers like Jagdish.

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Rapamycin prescribing longevity doc in NYC area?
#2

I encourage anyone who has not weighed in on this topic to do so… as Justin suggests, its a complex issue, and there is no right answer for everyone; you have to make the choice yourself.

The question about what to tell your regular doctor… regarding your rapamycin use, has been a topic frequently discussed. I recommend you review this thread: Do you tell your doctor you are taking rapamycin?

The recent Bryan Johnson interview with Mark Hyman, Bryan mentioned having to go to an ER doc when he fell hiking and I think injured his leg which needed stitches. When asked, Bryan Johnson started telling the doctor about his medicine regimen and of course, the doctor was freaked out… rapamycin, metformin…in a healthy person… it can take quite a bit of explaining I suspect.

There may also be insurance repercussions (in the USA) if you tell your doctor and it goes into your permanent medical record… Declined Part B Supplemental insurance due to Sirolimus

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#3

Before I started rapa, I discussed it with my cardiologist and he had no objections (the particular concern was interaction with my other meds). However, since I started rapa I have not “closed the loop” and officially informed him that I’m taking it. I’m not keen on that going into the database. But perhaps some of the physicians on this board could tell me why I should want it in there…

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#4

Unfortunatly, it’s one of those “it depends” situations. Depends on your doctor, depends on your insurance, depends on whether you have conditions which need medications that can interact etc.

I’m planning on getting on multiple meds: bempedoic acid, ezetimibe, acarbose, empagliflozin, rapamycin, maybe telmisartan. I plan on not telling my doc a thing.

My PCP is a nice guy, but very conservative. My lipids and blood sugar and blood pressure are all going in the wrong direction despite my best efforts at diet and lifestyle interventions. He did put me on 10mg atorvastatin, but has no plans on adding anything despite my lipid numbers being pretty dire (including an off the scale Lp(a)). He did send me to a cardiologist who wanted to send me to a lipidologist but my insurance denied that. So even if somehow I get a script for a PCSK9i, it’ll be fully out of pocket which I can’t afford.

So I have to take matters into my own hands with the help of Indian pharma. What would be the point of telling that to my doc? Even if he doesn’t put that in my records (which I don’t want, for obvious reasons), what added value does he bring to the situation? He’s opposed to my taking anything until I’m actually diabetic, actually have a heart attack, etc. - in other words, not prevention, but treatment once you get sick, that’s how the insurance company wants it, and that’s what he’ll do. So what’s the point? Is he going to guide me with my “illegal” meds? Warn me of interactions? Fat chance. He might even suggest “in view of your self-adminitered polypharmacy, you are a non-compliant patient and you need to find a new doctor” - rules are rules and he’ll say “well, I’m subject to review too, I can’t just prescribe anything”, he’s part of a system and not a free agent, so he must think about his job security too. Nice guy, but hey, he’s gotta eat. Meanwhile it’s my health at stake - when those two collide, I gotta take care of my health.

The reality is that at this point I have to do all the reading and testing myself, and if I do a deep enough dive, I feel like I know more about some of this than the doc does, so there is literally nothing to be gained by bringing him in, and a lot to lose.

Of course, there will be complications. I do have a yearly physical, just to keep tabs on general health, as I’m sure he has the kind of clinical experience I don’t, so I may miss stuff he can pick up on - a kind of insurance(!) if you will, heh. With the physical there will be blood tests. In fact, come October I’m scheduled for my yearly physical, where again, I’m sure my numbers will be terrible (lipids, blood sugar). Right after that, I intend to go on my polypharmacy spree. Then next year, he’ll look at my numbers and say, “your lipid and blood sugar numbers look great! good bp too! did you do anything different?” I’ll look at him with wonder and go “gee doc, I have no idea, I guess those extra walks I took really worked, ain’t the human body a great mystery, thank the lord and may He bless you too”. Of course he might go “but wait, you have a ton of glucose in your urine!” - so I might have to quit empagliflozin a few days before the test, or if I don’t I’ll just go “but look at my kidney and liver and fasting blood glucose and A1c - all fine, so must be some lab mess up, in any case nothing to worry about”.

Is this ideal? Nope, much better to have the doc in your corner, but that sadly is not always possible, so what are you gonna do?

But that’s me, and my situation. Everyone is different and that’s why “it depends”. If you have some conditions, maybe cancer, or whatnot, and are on some other medications, you really are in a tough spot because of complications from possible interactions - but, question: what if you doctor has little knowledge or clinical experience with rapa or rapa analogues, especially in off label use? In that case they may not be able to help guide you anyway.

But if you have an open-minded doc, someone who respects your willingness to take responsibility for your own risky choices, someone who is your ally rather than a servant of the insurance and medical establishment, well, they may be an asset in your health journey.

Ultimately, it is you who is repsonsible for your own health. I’ve personally witnessed a case where a woman had tongue cancer and due to various insurance rules and availability was not able to start treatment immediately and the delay resulted in ultimately her death. Nobody seemed to blame the system, while in my head I was screaming “do all you can NOW! EFF THE RULES!”. This is so, so common, where the patient just accepts whatever the doc says, patients in my situation, where the medical establishment waits until I’m actually diabetic and have CVD problems before treating, and the patient just goes “ok, doc”. I’m not willing to go along with that.

Which is why my decision is to keep my cards to myself and not overshare with my doc. He’s a nice guy, but it’s my life and my body. YMMV.

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#5

Well said.

About 20 years ago my Triglycerides were over 400. I asked my doc for Lovaza (Omega-3 ethy esters, generics did not exist then).

Fast forward about 15 years, the same doc, look looks at me, “Your triglycerides used to be high, weren’t they?” I responded, “yup.” He said: “How’d they get into the 40’s?” I said: Remember I asked you to put me on Lovaza, long ago, well, you did, and there’s the outcome with some lifestyle mods."

He then said: “I’ve got some other patients with high triglycerides…I’ll have to look into this…”

Yup, “Ultimately, it is you who is repsonsible for your own health.”

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#6

Show me a doctor who understands Rapamycin and isn’t on this forum, and I’ll show you a unicorn.

Wait. I’m not sure that those doctors exist. :wink:

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#7

I get my Sirolimus via prescription from a U.S. doctor - not my PCP. When I next went to my PCP he tells me, “So, you’re taking Sirolimus eh?” I was startled as I hadn’t realized that my PCP gets info on any prescription I fill, from any doctor, via some shared database. So I guess I didn’t have a choice in my doc finding out about it.

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#8

How did the PCP respond and what was his take on it? Was he familiar with the longevity angle?

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#9

My PCP is around 50 and pretty mellow. First of all he asked what I thought about it and any benefits I’m getting. He was pretty interested and curious. No judgement. He said he’s read about it but I’m the only one he knows who’s taking it. He just said to keep him updated on my experience. I think he may be contemplating it for himself. I’ll ask him about it next time I see him.

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#10

Sounds like a decent doctor. Open minded, not so open that his brain falls out, but not the usual. I’d guess he might be a keeper.

So many of my patients on the initial consult enjoy the interaction with someone who not only understands the science but is in there doing it themselves.

As physicians, we are on the same journey … we are going to get sick, die, get cognitive decline … all the same stuff as everyone else. You’d expect superior knowledge would result in us being on the cutting edge and pushing all the clever stuff - or at least being aware and knowledgeable on it.

Sadly, so many PCP’s are not even doing the basic risk mitigation for their patients that well. It is no wonder that the clever stuff isn’t even on the table.

So … I guess my advice is disclose when it makes a difference (which would be pretty rare) and disclose when you have great doctor who is on board with this line of thinking. Other than this I’d be cautious. I just had a patient today report that his Urologist has essentially fired him as a patient because he considers him to be a high risk patient because he is taking Rapamycin.

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#11

Agree with @DrFraser. Well, except for maybe the brains falling out. Hate when that happens .
Rapamycin alone is different than taking 4 or 6 meds that you’re not telling you doctor about. Then you might want to mention some of them and why you’re taking them.
I personally don’t tell my doctor about Rapamycin. I like her, but she is definitely a stay within the lines kinda person.

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#12

Are you really considering taking the Sirolimus during radiation therapy? Rapa definitely has a significant effect on wound healing, so wouldn’t that be problematic with radiation therapy also?

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#13

Interesting - so my rudimentary understanding on radiation therapy, somewhat traditional chemotherapy, is greater damage to rapidly reproducing cells (which cancers generally are).
So having mTORC1 inhibition, if active on the tumor cells, if it slows growth could make them less susceptible to the radiation, would be my thought on this. Additionally, it would be complex to not be until inhibition with rapamycin and still take it, as radiation is often daily or a few times a week.
I’d agree with @Pat25 that this might not be a winning approach. Anyone else have different thoughts on this?

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#14

Valter Longo speaks about FMD as an adjunct to chemo for cancer treatment. The idea is to preferentially weaken cancer cells which cannot stop growing when there is a resource shortage. No autophagy for cancer? I don’t know if rapa would have a similar effect as FMD. I don’t know if radiation treatment would be able to take advantage of weakened cancer cells the same way as chemo.

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#15

Pros and cons seem common, I’m leaning towards not taking the sirolimus as its effect seem too difficult to predict.

The following paragraph/article, in a sense, seems to show that sirolimus may well work against cancer, but in the following case, it perhaps, worked too well, causing toxicity. Therefore, if I stayed on it, I’d have to share it with my RadDoc, which likely would elicit a “no way.”

“The toxicity to normal tissue, significantly out of proportion, to the radiation dose delivered may be associated with concurrent use of sirolimus with radiation therapy. In addition to its anti-neoplastic effect, continuous mTOR inhibition with radiation therapy has been shown to disrupt key signal transduction pathways which may be responsible for radiosensitization and subsequent enhanced toxicity to normal tissue (12-14)”

Then there is this: [Inhibition of mTOR enhances radiosensitivity of lung cancer cells and protects normal lung cells against radiation]

https://doi.org/10.1139/bcb-2015-0139

“Recent studies have shown that rapamycin shows promise for inhibiting tumorigenesis by suppressing mammalian target of rapamycin (mTOR). We found that the combination of rapamycin with irradiation significantly diminished cell viability and colony formation, and increased cell apoptosis, as compared with irradiation alone in lung cancer cell line A549, suggesting that rapamycin can enhance the effectiveness of radiation therapy by sensitizing cancer cells to irradiation. Importantly, we observed that the adverse effects of irradiation on a healthy lung cell line (WI-38) were also offset. No enhanced protein expression of mTOR signaling was observed in WI-38 cells, which is normally elevated in lung cancer cells. Moreover, DNA damage was significantly less with the combination therapy than with irradiation therapy alone. Our data suggest that the incorporation of rapamycin during radiation therapy could be a potent way to improve the sensitivity and effectiveness of radiation therapy as well as to protect normal cells from being damaged by irradiation.”

It’s further complicated by the fact that we “pulse” whereas most articles are transplant patients that take Sirolimus daily.

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#16

My doc at Mayo Clinic supports me fully taking rapamycin. She does not prescribe but it is documented in my file. She is a Peter Attia fan and stays up on the latest and greatest. Also go to a more integrative doc in California and she supports as well. I’m in the generic 6mg.

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#17

My mom’s doctors continue to give conflicting advice to her about her meds. Honestly, I’d trust @DrFraser @KarlT over some of them. Here’s some examples:

  1. Take Omega-3s (cardiologist). Don’t take Omega-3s (PCP).
  2. Don’t take amniodarone and taurine (PCP). Take amniodarone and taurine (Research papers on lung fibrosis).
  3. Don’t take taurine and Atorvastatin as they work on the same pathway (PCP). Take taurine in the morning and Atorvastatin at night to avoid pathway issues. (Research)

Sometimes you have to wonder who’s right. If my mom runs into conflicting advice, she defaults to doing nothing.

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#18

So … in general - take Omega 3’s up to 1000 mg daily of DHA/EPA seems safe. Measure Omega 3 index, if <8% and at 1000 mg daily this is a gray area, as pushing up beyond that increases AF rate — but most people get into that range with 1000 mg daily. I’m more interested in Omega 3 index for neurocognitive decline in advanced age and also for hemorrhagic stroke reduction. The cardiac benefits remain unclear - but probably up to 30% risk reduction of events. I’d like to see more data that monitors omega 3 index, not intake.

I’m not seeing any issues with Taurine and Atorvastatin, and time of day as Atorvastatin has a half life of 14 hours and Taurine is rapidly cleared within a few hours.

It’s interesting that your PCP is giving advice on supplements and Omega 3’s. So many have no idea and just don’t know. I guess what is worse is giving advice on this that is wrong.

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#19

Is there a mechanism of action for omega 3 to cause AF?

BTW, I have a podcast coming out that proposes that over breathing is a cause of AF. Over breathing leads to lower arterial CO2 … leads to blood vessel constriction… leads to less blood flow to heart muscle… leads to cell damage and scarring ….leads to improper electrical signal propagation (AFib).

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#20

I’ll add one more thought on this database that tracks our prescriptions in the USA. I do wonder if I’d ever get denied life insurance, as I’ve read of folks who have been denied insurance because they’ve been erroneously flagged as an organ transplant patient (because they take Rapa) or as a drug addict (because they take Low dose Naltrexone (LDN), which I also take, but not for addiction).

However I’m fine with the potential hassles/misunderstandings that may occur as I’m benefitting from taking these medications.

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