So, I log into my general practitioners patient portal and I noticed that Surescripts has reported that I am getting Sirolimus 6mg Capsules Entered by SureScripts (which I got from Dr. Garcia, from another state, from a compounding pharmacy). I had not discussed the protocol with my GP nor had I told her I was taking Sirolimus. I’ve never attempted to have insurance pick up the tab, I pay out of pocket but there it is in my “permanent record” in my GP’s portal…geez, there are no secrets…I guess I may as well broach the subject with her now even tho I know she doesn’t understand it…
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Ironically, what you dislike about that, is what most patients expect. Almost anytime I ask a patient about the past history, medications, or allergies, the answer I get is “you should know, it’s in my records.” Most of the time it isn’t as medical records are in the infancy of communication with each other.
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Wow - that would be a little concerning to me. I would, if I were in this situation, print out and share this recent paper that just came out (download and print the pdf files):
Here: Evaluation of Off-label Rapamycin use to Promote Healthspan in 333 Adults (New Paper)
and also this paper, the Mannick 2014 showing immune benefits (from another rapalog - everolimus): mTOR inhibition improves immune function in the elderly - PubMed
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Thank you, and I will share this info. I had asked my GP once, if she knew anything about Rapamycin and she said no and that is where I left it. I had to look up SureScripts up because I don’t know who they are and they are:
Surescripts is an Arlington, Virginia-based information technology company that supports e-prescription, the electronic transmission of prescriptions between health care organizations and pharmacies, as well as general health information exchange of medical records.
Now, the Doc I see for my knee (Supartz injections and he does my hormone pellets) was interested in learning more about Rapa. I guess everything will be reported and shared now. Like a lot of folks on this site, we had kept it on the down low. It’s not easy to find a more progressive doc.
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That brings up the question if it’s wise to divulge to a doctor that one takes rapamycin.
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Yes, I have that problem with my doctor. Regardless of the myriad of documents I have signed over the years to give permission to disclose my medical information my doctor is still not able to access LabCorp or Quest to see reports that he didn’t prescribe.
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There is a near-complete chance that you are not absorbing these. Rapamycin needs to be specially formulated to pass through the gut and be absorbed:
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Beware when you are getting some of these drugs. I got a prescription from PushHealth (not my regular doctor) for metformin a while back, which showed up when an insurance company was looking at my background for a life insurance policy. The implication was that I had diabetes or something, which I don’t, and never have. Blood sugar has always been good.
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Yes - this is the issue in the USA - the fact that you’re taking these drugs may raise alarm bells at the insurance companies, who could deny coverage. The irony is pretty ridiculous and points out the problems in the healthcare system (where cutting edge preventative medicine is a negative thing).
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In australia we got a similar system. Doctors are able to report a file of the medication they prescribed on the goverment health profile system , not all doctors do this, but some. I can see rapamycin and acarbose on there a few times however we can remove/hide it so we got some control. Only health professionals can access our profiles (doctors, specialists, nurses, pharmacists) however they must have a valid reason.
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Sometimes the medical system is annoying; sometimes amusing, and once in a while it works in your favor. I filled my rapamycin prescription at a local grocery store pharmacy a couple of years ago, and explained that the medication was off label and not covered by insurance. The pharmacy contacted the insurance company anyway and the insurance company paid for the pills. I try to be somewhat ethical, so I called the insurance company to correct the mixup. No dice. They kept paying it anyway for a couple of months. They eventually quit. I was concerned that I would be asked to pay it back, and the insurance price was probably more than double the Goodrx coupon price I typically pay. This is the only time an insurance mistake has worked in my favor. I quit going to the dermatologist since my fully covered preventative screening is always coded wrong and I get a big fat bill every time…
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Every med I take is on my MyChart portal. It could save your life some day if you end up in the emergency room unconscious.
All my doctors (GP, endocrinologist,cardiologist, Dr Green) know all the meds I take, even Rapamune. Not a single one has raised an eyebrow.
Also, you shouldn’t need to get a generic drug (sirolimus) through a compounding pharmacy. My insurance supples a 90-day prescription for $12.00. It’s a no-brainer.
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You’re lucky. How did you get a doctor to prescribe this, and insurance to cover it? Any tips that might help others in this?
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Dr. Green wrote the prescription, 90 day supply refillable 3 times. I submitted it to my mail order pharmacy (express scripts). No issues so far.
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