Have you tried biweekly?
@medaura, my current dose is 2mg+grape-fruit (whole fruit.) My process has been to stay at a dose until side effects (effects I donāt like, that is 
) go away. Only then do I consider going up.
No, I have not had a higher resting heart rate. That would concern me as well.
2 Likes
Have you tried biweekly?
@L_Hayes I am on a weekly pulse cycle. I have not used an every other week pulse yet. My process is slow and steady, keep track of effects, and re-eval every cycle. If or when I see a reason to try every other week, I will.
1 Like
Sol, did you deal with worsened fatigue on starting? Iām taking 1mg * twice weekly with the goal of moving to 2mg twice weekly. I have me/CFS, fibro, Dysautonomia. Even at 1mg, the rapa is wiping me out terribly. I must stay in bed and several times a day I fall into a hard crash kind of sleep, every day. This happens even on the 3rd day post dose (and then itās time to take a new dose).
Iāve just taken my fourth dose. I really donāt want to give up but also curious how Iāll know if this sleep may be helping me heal vs a sign that rapamycin is not right for me.
As someone with CFS, did you experience this kind of crippling fatigue on startup? 
1 Like
Just curious, why do you take it twice a week? For possible healthspan/longevity purposes it is typically taken once a week.
My doctor said in my case the goal is to keep mTor down consistently to modulate the immune system. She suggested this type of dosing is getting better results for autoimmune conditions.
4 Likes
Sol, did you deal with worsened fatigue on starting?
The first time, I had mild fuzzy-headedness. Focus impairment. But also a subtle energy-up sense, and improved sense of well-being. After that first time, the side-effects were much milder as far as fatigue-like symptoms go.
Iām taking 1mg * twice weekly with the goal of moving to 2mg twice weekly.
Twice weekly? Thatās not typical for those of us here taking it for health, unless youāre taking it as an immunosuppressant to prevent organ transplant rejection, or a few other diseases, for which it is typically taken daily.
Around here, we tend to dose once a week, or once every two weeks. I donāt know enough to comment on a 2x weekly dose.
I have me/CFS, fibro, Dysautonomia. Even at 1mg, the rapa is wiping me out terribly. I must stay in bed and several times a day I fall into a hard crash kind of sleep, every day. This happens even on the 3rd day post dose (and then itās time to take a new dose).
Oh, wow. I am so sorry. I would probably hesitate to continue if those were my results without anything positive. No pluses so far?
Could someone link to a key post, or summarize why we take rapa no more often than once a week? That might be helpful for @Rapa4mecfs (who may have limited focus.). Perhaps something to pass on to the provider just in case it might be useful.
Iāve just taken my fourth dose. I really donāt want to give up but also curious how Iāll know if this sleep may be helping me heal vs a sign that rapamycin is not right for me.
Iām curious about that, too. And concerned for you.
For me, I knew it was a healing influence. I could feel it.
As someone with CFS, did you experience this kind of crippling fatigue on startup?
No, I did not. I felt some mild fatigue symptoms, but more energy-up, and improved mood. Also a few other clear signals that things were healing in my body. I am starting my 3rd month of weekly doses, and I look forward to each dose.
Feel free to write me directly if you want more privacy in the conversation.
2 Likes
What are your vitamin D serum levels?
Thank you for the helpful reply. This is the rationale my doctor provides, re, twice weekly dosing ā¦ āThe difference between this dosing and the more āconventionalā longevity dosing of once a week is that you are actually keeping mTOR suppressed longer. Many Rheumatologists use even daily dosing for auto-immune disease but the risk of daily dosing is excess immunosuppression. The idea of twice weekly dosing is to get most of the benefit of suppressing mTOR without having a period of the week where it is highly turned āonā and not inhibited by rapamycin/sirolimus. Iām hopeful that the fatigue and headache will resolve, many people are starting to experiment with rapamycin to TREAT migraine/headache (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4313067/) so Iām hopeful that this is not directly caused by the rapamycin and may just be an adjustment to the medication.ā
4 Likes
Scattered here and there are occasional references to edema (and/or lymphedema) as side effects of rapamycin use, but itās not completely clear what the underlying mechanism is. (Although I did see one note that perhaps rapamycin is inhibiting production of some cytokines that might be affecting vascular permeability.)
Has anybody else had this issue? I have been using rapamycin for several months (8mg once weekly), but I stopped about 6-8 weeks ago due to bilateral pretibial pitting edema. Itās still present and Iām about to go consult with a cardiologist for that (along with a few other issues). If the cardiologist has a plausible explanation for the edema then great, but otherwise Iām left with a decision about whether or not to restart rapamycin. Anybody have any additional insight into this issue they can offer?
1 Like
I had the same issue with swollen legs at the end of the workday after 2 1/2 months of Rapamycin 6mg plus grapefruit one day/week. I made a presumption that it might be a very, very early CHF, started myself on Empagliflozin, and the edema was gone after one week of treatment. I am very fit, so I could be wrong about the CHF. I am curious about what others say.
3 Likes
So - just so Iām sure I am understanding you - all you did was add empagliflozin, and you kept the same regimen of rapamycin?
1 Like
Yes, that is correct!
I was peeing more often for sure.
3 Likes
How/why did/do you think it is very early congenital heart disease?
1 Like
Congestive heart disease, being in my early 60s, would be a plausible explanation for edema. I should have used CHF.
Maybe my mixing up CHD with CHF is indicative of early dementia, what should I take for that? 
2 Likes
Interesting! Were you also having any issues with your blood glucose? Was the primary effect that you were going for a simple diuresis, or are you aware of something more to it than that, mechanism-wise?
1 Like
Yes, I had swollen anklesā¦ for several monthsā¦I thought it was the combination of oral Minoxidol and topical.
Might have been the high rapamycin dosingā¦ 6mg and GFJ = 36 ng/mL
On lower dose of rapamycin past few monthsā¦ swollen ankles gone. Still using Minoxidol oral and topical. So was it the high dose rapamycin?
My GlycanAge biological age went up significantly too. As I stated, High Dose Rapamycin Might Not Be Better.
2 Likes
When I told my medical practitioner who is a PA, about the edema, she wrote a script for Lasix, but I tried to persuade her to try the Empagliflozin because I technically have HTN and Moderate chronic Kidney disease (I am 6ā 6", 245 lb fit person but it shows me as technically obese due to the eGFR calculation) as well and knew there might be benefits for both. She said she couldnāt, and I would need an echo and a cardiology consult which would take a while to line these things up, and I knew I would be unlikely to qualify due to having no diabetes. I know that being a doctor for myself is a bad idea, generally speaking, but I understand the system and the Game. Since I now qualify as a biohacker by taking Rapamycin and acarbose, I took the plunge. Just being honest.
6 Likes
Maybe my mixing up CHD with CHF is indicative of early dementia, what should I take for that?
Well, as a fellow doc you might well know all of this, but for anybody else I might suggestā¦
- Adequate sleep, preferably at least 7.5 hours/night.
- If you have a ānon-lowā Apolipoprotein B level (opinions vary as to what that means) I might suggest rosuvastatin 10mg-20mg, probably along with ezetimibe 10mg and at least 200mg of CoQ10 or 100mg of ubiquinol.
- Various supplements, tailored to your individual situation/needs. Some things I might regularly consider for many people concerned about dementia and MCI include ashwagandha, curcumin, fish oil, CDP choline, vitamin B12, boron, various nootropics, and possibly vitamin E. The jury is very much out on the ultimate value of several of these (and several more.)
- Whatever it takes to keep your SBP below 120 most of the time. (lower BP targets of 120 or less vs. 140 or less have been shown to help reverse MCI.)
- Consider a ketogenic diet, particularly if you have any tendencies towards significant insulin resistance. A mediterranean-type diet high in fruits / veggies / fiber and low in sugars and overly-processed ingredients would also be a solid choice.
- Regular exercise, both weight training and Zone 2 / cardio.
- Possibly montelukast (has been shown to slow or even reverse MCI, at least in some people some of the time).
3 Likes