We’d like to get an updated idea of the exact dosing protocols, and successes or problems our members here are experiencing. Please respond to each poll as you scroll down this thread. There are a total of 4 different survey questions as you scroll down. Please answer them all, to the best of your knowledge.
How Frequently do You Dose Rapamycin?
(choose closest to your current schedule)
- Once a Day
- Once Every 7 Days (1 week)
- Once Every 10 Days
- Once Every 14 Days (2 Weeks)
What amount of rapamycin do you take for each dose?
(note: choose the closest mg choice to what you take. if you are taking rapamycin with GFJ, then calculate the effective rapamycin dose by multiplying your rapamycin dose by 3X to come up with an approximate effective rapamycin dose)
- 1 mg
- 2 mg
- 3 mg
- 4 mg
- 5 mg
- 6 mg
- 7 mg
- 8 mg
- 9 mg
- 10 mg
- 15 mg
- 20 mg
- 25 mg
- 30 mg
- 40 mg
- 50 mg
If you have ideas on how we can improve this type of poll / survey, please give feedback below and I’ll try to incorporate it in the next one we do.
I was in a rush to get this out and i already see some typos and mistakes… But cant change them once the poll starts.
How about how we are taking it? With grapefruit juice, olive oil, etc. empty stomach, morning.
A brand would also be interesting.
Maybe more specificity on the blood measures- e.g. my HDL and LDL numbers stayed good or slightly improved, but my triglycerides went up noticeably. (Every other measure is good)
I haven’t noticed any benefits yet (only two months of therapy). Perhaps add a “No Noticeable Benefits” to the benefits poll?
Given your ideas… here are some other questions. Not sure exactly how to structure the question about “how we are taking” rapamycin… some are mutually exclusive, some not, so it gets a little weird…
Keep the ideas flowing… what else do we want to know about our rapamycin use and results?
Here are some of what I’ve pulled together given the feedback and with a little more thought on the matter:
What version of rapamycin / rapalog do you currently use?
- Pfizer Rapamune
- Glenmark Pharmaceuticals Sirolimus
- Zydus Siromus
- Biocon Rapacan
- Rocas Sirolimus
- Panacea Biotec - Siropan sirolimus
- Actiza Sirolimus
- Dr. Reddy’s Sirolimus
- Sirolimus from a compounding pharmacy
How do you typically take your rapamycin / rapalog?
- With grapefruit juice
- Olive oil, or other fatty meal?
- Empty stomach,
How would you rate your experience with Rapamycin so far?
Scale of 1 to 5 with 5 being fantastic, 1 being terrible?
Given your experience with rapamycin so far, would you recommend Rapamycin use to a friend?
Yes / No
Sounds good. I really like the poll. It is very enlightening.
I think questions 1 and 2 could be amalgamated so we can parse out the true range of mg/wk… Actually I think it would be most helpful to know mg/kg/wk:
0.05 to 0.1mg/kg/wk
0.1 to 0.15mg/kg/wk
0.15 to 0.2mg/kg/wk
0.2 to 0.3mg/kg/wk
Great initiative! One other thing to ask is also “how long have you taking rapamycin”.
What Benefits Have You Experienced?
how about improving hearing, less tinnitus
How long did it take before you started noticing benefits and side effects (2 separate polls)
It would also be interesting to understand the significance / duration of the side effects. Its one thing if someone gets one mouth sore once (as I have - just once over the past 3 years) vs. say once every month. I think most of the side effects are short term, temporary and rarely return. The way the poll is setup right now - we can’t tell if the side effect was a one time occurrence and minor, or recurring and problematic.
So maybe a question about how significant a problem the side effects are…
From 1 to 10, with 1 being short-term and insignificant, and 10 being ongoing, frequent, and painful or serious.
What other Rx are you taking along with rapamycin:
Yes, I wasn’t sure how to answer the “side effects” question. I had one shocking day after taking 2mg the first time, but nothing that bad since. I found that, if I take Sirolimus in the evening, next morning I sometimes feel like I have a hangover…but I don’t drink. (Just feels like I drank a bottle of some rotgut spirit.) Now I take it with breakfast and I don’t get that “hangover” feeling.
Question #1 could be modified by adding Other category: e.g. I take 1 mg/day for 4 days, then break for 7 days then start again the same cycle.
“How long are you taking” could be added.
There needs to be an option box - my side effects aren’t listed. Also would be to if / when side effects subside with time