Hello, I am new here hence so late on your post. I have severe chronic muscle pain and fatigue (ME/CFS,IBM) and I am starting Rapamycin 6 mg/week in the hope it helps. Could you please give more info on the chronic pain and Rapa effect ? Did lower doses than 7mg+GFJ also help ? Tnx
1 Like
Hi Maxi,
I recommend starting with a lower dose and gradually increasing it to 6mg per week. This way, you can monitor any side effects and see how they interact with your conditions. Perhaps begin at 1mg per week and increase by 1mg each week until you reach 6mg, then assess your situation from there. This is the approach I took.
It’s hard to determine for sure if it’s helped my condition. Sometimes days after a dose, I feel it was beneficial, but I can’t dismiss the placebo effect, and I’m still managing my illness, so no miracles yet. Rapamycin is a powerful molecule, but its positive effects might go largely unnoticed.
Currently, I’m taking 5mg with grapefruit juice every 15-16 days. Given that I’m also APOE4/4, I believe the potential benefits outweigh the risks, as I’m actively trying to prevent any cognitive impairment. However, it’s crucial for each of us to conduct our own risk-reward analysis.
You’re definitely in the right place to make an informed decision. Good luck and let us know if there’s any more questions.
2 Likes
Dumb question and I’m not a doctor, but are you on a statin?
1 Like
No, I take only blood pressure medications and muscle relaxants/pain killer because of my chronic deseases (ME/CFS,IBD). I am just starting Rapa 6mg/week in the hope it helps.
3 Likes
@DeStrider What side effects made you lower your dose? Are they gone or just better on the lower dose. It still is a 12 mg equivalent dose so not that low.
I ask partly because it is always difficult to tell which supplement is causing the effects.
The side effect that made me lower the dose was itchy hives. You can see the pic here. At 6 mg + GFJ, I had over 50 itchy hives all over my torso which appear after dosing and last several days.
At 5 mg + GFJ, I get 5-10 hives and at 4 mg + GFJ, I get 0-1. So, I’m sticking with 4 mg + GFJ. I believe this is my body developing an allergic reaction, because the first few times I dosed at high levels, I did not get hives. However, now it is very reproducible.
I do get hives when I overexpose myself to other things I am allergic to such as animal dander. So I’m pretty sure it’s allergic in nature.
4 Likes
Thank you very much for the information. What do you mean by high dose rapamycin? What dosage?
Laura.
Could I enroll in your study?
Thanks. Laura
What do you mean by taking high dosage? What dosage of rapamycin you are taking. Thanks. Laura
This is the scale I use for weekly doses:
1-4 mg a week - low dose.
5-9 mg a week - average dose
10+ mg a week - high dose
I personally take 14 mg a week (4 mg + GFJ + EVOO) but have gone up to 21 mg a week at my highest.
@John_Hemming takes ultra-high doses very infrequently (60 mg+)
4 Likes
My current (ultra?) high dose is 22mg plus GFJ. A rule of thumb multiplies that by 3.5 for bioavailability. (-> 77mg) I am currently waiting for my WBC to be reliably above 2G before taking my next dose. I do blood tests weekly so I will know this soon.
I have posted glucose charts and blood work from one of my doses.
5 Likes
What made you decide to stick on a weekly dose rather than extend to around 14 days like a lot of people who take a higher dose?
My body can still only take 4 mg + GFJ before developing side effects whether it is every week or two weeks. So, I’d prefer to dose more often, although that does mean there’s always at least 1 mg of Rapamycin in my system while dosing. I do take a break every 3rd week to clear the Rapa out. So essentially I’m on for 2 weeks and off for one. It’s almost an every other week schedule.
5 Likes
@John_Hemming , are you still taking (or did you resume taking) these high doses, if you don’t mind me asking, and did you happen to post an update on your blood work anywhere?
2 Likes
I am still taking infrequent ultra high doses, but have not posted the details of my blood tests. I don’t think, however, that they are significantly different such that were I to post them you would find new information. I am running other experiments as well.
4 Likes
What is the highest dose you’re currently considering trying?
I am not currently saying this publicly. I am very careful with testing as I do weekly blood tests and monitor a lot of things. I am not sure my dosing as above or currently would be safe for other people.
3 Likes
I’m planning on starting at a low dose. I hopefully am starting rapa soon.
Thanks John, sorry if you mentioned anywhere, but do you take a statin/Ezetimibe or any other hypolipidemic agents?
Not other than berberine and intermittent alcohol
2 Likes