I don’t bother with creatinine levels to estimate GFR personally - taking creatine increases my creatinine way too much but my cystatin C didn’t change at all. (~40% of renal transplant patients on it get increased creatinine)
Not to mention, HbA1c can be discordant with fasting glucose and can be overestimated in certain situations - anemia is one possible reason - which can be a side effect of rapamycin (~50% of renal transplant patients on it get anemia). Anemia can also cause increased ESR and being female/older can increase ESR such that values should generally be corrected for this. HOMA-IR may be useful for longitudinal analysis if one understands the limitations.
As for rapamycin, arthralgias (not arthritis) are on the FDA label (~30% of renal transplant patients on it get arthralgias) and appear to be a common side effect at least when used for the labeled indication.
First time I heard of arthritis exacerbated by rapamycin but it’s very much difficult to predict on an individual level with off-label use + other drugs and not much data on this. Different arthritis types have different pathogenesis as well - so asking for other people’s experience with rapamycin on their arthritis may not apply at all. When it comes to the immune system, it gets incredibly complex. Do you have a firm diagnosis of what arthritis and how they came to the conclusion? In very layman’s and oversimplified terms, there is evidence for the innate immune system to be activated by mTOR inhibition in humans, particularly interferon stimulation.
@TongMD Thank you for your valuable input that I will want to look into in more detail. I barely visit here anymore as I lack in time to post here - so sorry to keep this very short.
But for the sake of updating’this thread: I can say that since I stopped taking Rapa all my symptoms have completely disappeared. Besides the fact that of course I know when I experience arthritis again (as after all I experienced it before and it was pretty invasive at the time), I also have dozens of pictures to show for it, as well as blood work that returned to baseline after I stopped taking Rapa for several months. (As said: my blood work had been rather stable for years until I started taking Rapa for 9 months).
It seems that we often forget that dosing is very individual. Most follow guidelines set by other people. It could be a wrong approach. You most likely were overdosing - hence all negativities. It’s wonderful that all side effects stopped after you paused. I had similar experience in the past and a 4 month break resolved all my issues. Then I started again with a reduced dose and longer breaks. The result: I still don’t have side effects. Have you ever considered just 2mg per month or another very small dose?
I was thinking something similar in regards to the dosing except instead of setting a certain length, go by when all the arthritic pain is gone. I can imagine that it could vary greatly depending on stress, diet, season etc.
I have rheumatoid arthritis and am trying Rap for the immunomodulating possibilities. I’d rather not continue to take the prescribed injectible immunosuppresive drugs during COVID and Flu season. Also, I have had reactions to them and it’s quite scary. So I’ve been taking the Rap weekly. I also have noticed severe swelling in my middle right finger which is historically an indication that I’m very inflammed, and my bloodwork concurs. I’m on the fence with continuing. Trying to give it time. I’d love to hear from anyone else who is experiencing RA and trying Rapamycin. I also experienced migraines which I thought might be related to Rap. Anyone experience that?
I definitely was getting the beginnings of regular age related arthritis (inflammation) something my mother also had in her hands. After about 3 months from starting rapamycin at 6 mg once a week that pain completely vanished. I did a GlycanAge test after a year and show no inflammation. I have continued testing every 6 months… no inflammation… and no pain.
Now, going on 3 and a 1/2 years use of rapamycin… I don’t have any aches or pains in any part of my body. My joints, hands, fingers lower back and feet. I do pretty good workouts every other day… no recovery pain.
I don’t have a diagnosis but I would be very surprised if I did not qualify for some definition of arthritis. Things that help me significantly are only maraviroc (gained off label use for long covid inflammation), L-serine (bulk powder, I take about 8g a day) and meclizine. I explained a bit more in the other thread but rapamycin made my symptoms significantly worse even at very low doses. I’m in my 20s by the way, not age related arthritis
I wonder how much you’ve benefitted from rapa, and how much from testosterone-aided exercise. Something people seem to miss when criticizing trt is that it can often (but not always) lead to greater activity/exercise levels. You’re a poster boy for this!
Have you any way of teasing out the rapa from the exercise?
My only subjective benefit from rapa has been remission of a back niggle I’d had since chopping wood twelve years ago. Unfortunately I started rapa about the same time that I started using a chin-up bar. So I have no idea what’s caused the benefit.
Hey there Lar – Let me see if I can help demonstrate where I see the difference in my TRT dosing and Rapa. Actually, I started TRT with weekly injections 200 mg 1ml in late 2019 for one year before rapamycin and really bulked up in size to an X-L in some shirts and neck. I weighed about 198 pounds. After starting Rapamycin in Fall 2020 I lost some of that bulk down to 180 lbs. Started getting shredded, abs showing, arms more defined.
Also, although my muscles are now about half the size that they were before rapa – they are much stronger. Unlike TRT where my weight max didn’t improve much… while I was on rapamycin I could lift heaveier and heavier weights every 3-4 months. So I am a bout 1/3 stronger than before with just TRT - I am also much smaller, but defined - toned. Shirt size L.
As far as I can remember from a conversation I once had with an arthritis expert, there are two types (rheumatoid and osteoarthritis) and one type is best treated with Meclizine, and the other is best treated with Rapamycin.
(I don’t remember which way round it is though).
A year of rapa has done nothing apparent for my age-related osteoarthritis. In fact, one elbow has gotten worse. Boswellia worked to reduce pain in hands, but does nothing for elbow.
I had some around here, started taking it again (6-9mg/day) and almost immediately saw a reduction in pain. Makes me wonder about placebo effect, but so far, so good.
I had taken it for a couple of months, but dropped in favor of other supplements. My elbows were not a problem at that time.
I have generally seen 3mg per day seen as a maintenance dose, but if you have been off it for a while taking a little more for a while might be a good idea.
As it turns out,.according to my health care professional, I don’t have elbow arthritis. Me attributing pain reduction to boron was placebo effect, I guess.
Apparently it’s ‘golfer’s elbow’. Stick your arm out in front of you, palm up, then twist palm to the right (if it’s right arm) and if the area above your elbow aches, then bingo.
I bought a compression strap he recommended that reduces the the pain, but after a couple months hasn’t it cleared up. He also gave me some exercises I haven’t tried yet.
The thing is…I don’t play golf. Or tennis. (I meant to say tennis elbow above.)
Again, according to my HCP, this occurs after some kind of heavy lifting strain. Not aware of anything I’ve engaged in tht might have triggered it. Could have made sense months ago when I was lifting weights.
