Thanks. I also have experienced ankle and foot edema in the past. Originally I was thinking I had a kidney issue but my cystatin-c results were very good so I decided to ease up on rapa.
The optispan podcasts are very good. We are getting much more information in this space. I wonder how quickly the off label rapa use will grow. Matt predicts a supply vs demand problem in the future.
Yes, I suspect a supply and demand issue for rapamycin could be true in the near future.
I have about a 4 year surplus of rapamycin right now… thanks to using it with GFJ. I plan on growing that amount this year to 7 years.
The issue with levels is that we (nobody) don’t know what the desired level is. What’s too low? What’s too high?
All we can do is measure any effects and limk that to dosage and/or blood serum levels.
A good idea. I am thinking likewise.
True. This is why I haven’t been in a rush to test. I’m managing my dosing based on effects which are quite vague until they aren’t. My assumption so far is that good effects are slow to arrive and are indistinct (less inflammation, improved autophagy?) while negative effects are quick to show up and are distinct (infection). I hope I’m not wrong by too much in this.
Agree. Unfortunately it is a long process to work causation vs correlation. It may takes months on a new dosage to determine anything.
Have either of you measured protein in urine (UACR, urine albumin-creatinine ratio)? Severe proteinuria can manifest as edema.
Not me. I’m not sure what caused it but it did stop after the weekly dosing shifted to biweekly. My blood creatinine is high normal but I have a lot of muscle mass.
Shouldn’t a UACR be zero?
NEWS ALERT:
Just took my first dose. Instead of 3mg, I took 1mg just to make sure I didn’t implode. And no, I don’t feel younger yet!
I read a story on this forum about someone in the US who was denied insurance for being prescribed rapamycin. I might be overthinking this, but doesn’t lab testing carry a similar, small risk? In other words, wouldn’t the confirmation of rapamycin use through lab work provide an insurance company with a hypothetical reason to deny insurance
It seems like it would be a violation of HIPAA privacy laws to share your lab tests with any outside organizations. I would check the fine print on any lab test company that you may be considering using.
Privacy Rule
The HIPAA Privacy Rule is composed of national regulations for the use and disclosure of Protected Health Information (PHI) in healthcare treatment, payment and operations by “covered entities” (generally, health care clearinghouses, employer-sponsored health plans, health insurers, and medical service providers that engage in certain transactions).[22]
On that note, my pharmacist and doc said do not run this through insurance… i guess they knew about this potential issue.
Tomorrow is my second week and ready to go up to 3mg from my 1mg trial last week. Question… I am going on a rare vacation next week and want to be at my best. I don’t want side effects to ruin it… be it mouth ulcers or even a pimple (yeah, I’m vain!)… do those happen randomly and i should just wait? Or is that after a while or for people taking high doses? Thank you! And btw, how many women are on here? Does it affect us differently due to size/hormones?
Side effects, from my experience, just happen randomly. I had a mouth sore once at around 4mg/week or so, and never again. Other times they are more consistent; I had a rash under my Fitbit band for a number of months until I stopped wearing it.
I have no idea what percent of our forum members are women, people choose random names that don’t indicate gender, so its impossible to tell. We haven’t done a poll yet here on this issue either.
That’s helpful, thank you!!! Maybe I’ll skip this week just to be safe… I’m a big baby!!
Going on a trip …better safe than sorry.
I’d skip.
I was taking high amounts of rapamycin and had eye duct clogged in my eye… one side effect… I just had to wait it out. Sucked
Messed up a trip to Germany and Czech Republic.
Now…I skip when I travel.
This is very helpful… and argh, what a trip to have that happen during!!! I had an eye duct clogged once… it was the weirded thing!!!
Woman, 61, about to take my first ever dose of 1 mg. I’ll go up 1 mg a week till I get to 5, or maybe 6, and see how it goes from there. I’ll do blood work in June - I’ll be a few weeks into the stable dose then. I’ll post anything worth noting, including side effects meanwhile, and then any changes that show up in blood work. Hopefully it’ll help with the big picture we’re trying to get here.