I personally felt like it was really important that my rapamycin be in my medical record. I have a long-standing severe disability and do need to take some prescriptions that are now considered controlled substances (the US has become very anxious about these categories), and I didn’t want to risk losing the trust of doctors if Rapamycin were to effect my blood tests.
And indeed, I’d hoped for some attendant blood tests, although the amounts required by agelessrx would have been a barrier for me in my severe condition (as was their price).
For the same reason, even though I was pretty certain I knew the answer, I presented my PCP with a request for the medication and why it could prove relevant to my severe ME/CFS diagnosis. She responded that she thinks I need to see a ME/CFS specialist in order to get on Rapa. She knows full well that I have no chance of gaining access to a ME/CFS specialist, but at least she was signaling openness.
This meant that I could honestly tell the push health doctor that I had discussed rapa with my primary care physician, and that, while she did not feel her hospital network would allow her to give it to me, she had encouraged me to look for it elsewhere.
That, and the fact that I’d had a blood test within the last couple of months and could attest that my kidneys aren’t in any great distress was enough for the push health doctor.
I did send the push health doctor a fairly substantive explanation of the ins and outs of rapamycin for ME/CFS with a study link and a YouTube link and got outright SCOLDED for sending information which he found irrelevant (for anyone who is wondering how hard they should try with presenting their case).
Side note for those w MECFS:
In reality, rapa has been extremely hard for my body to acclimate to with attendant decreases in functionality at each increase in dosage—really bad PEM w everything that means physically and cognitively, also enormous lymph nodes, worse sleep, and migraines. 3 months’ worth w the first dose, Almost 1 month w the second. But hey, at least the duration of the severe response was shorter when I increased my dose the second time. So I’m NOT yet seeing ME/CFS improvements and am only at 4mg but AM seeing improvements in a few other conditions, one of which is very important to my functionality, and that has caused me to be exceptionally stubborn about sticking this out.
Continuing on the PUSH health experience:
There is now some stricter oversight of push health doctors to ensure they do not give out more than three months’ worth of prescriptions. But I made it clear that I would welcome a longer fill, and my push health doctor slyly obliged by changing the milligrams of the pills in the calculations with which I had submitted my request. So I had written 72/1mg or 36/2mg in my request (I really wanted 1 mg pills in order to do fine titrations, but I figured all of this was gamble for approval and didn’t know which size pill might end up being cheaper), and he gave me a script for 72/2mg at 6g/weekly.
The CVS pharmacy picked up on the discrepancy and only gave me 36 pills at a time with one refill, but to my shock, my insurance covered it so that I didn’t have to pay the GoodRx fee. And they covered it as a lowest tier prescription at zero bucks!
However, next year my new insurance will NOT cover it due to the need to fill out a prior authorization indicating that is not being used off-label and that your doctor can prove on-label conditions. So that restriction will obviously increase costs and also more generally has me a bit nervous about whether that could be the way the pharmaceutical system here is inclining.
I’d had such a strong urge to stock up from India a couple of months ago but figured I was being silly—also I just don’t have much financial wiggle room. Now I would find it comforting if I had, especially since, in my effort to be kind to my caregivers, I hadn’t refilled the rapa as soon as it was eligible to be refilled, waiting until it coincided with another trip. If I had, I would have been eligible for a third free fill w another push health request before the year is out. (Regrets!)
I hope to be able to request the same push health doc next time. I won’t rock the boat by asking for a larger amount but will request the same 72/ 2mg offering.