I am a new rapamycin user, female age 66. I decided I felt more comfortable at first being monitored so signed up with HealthSpan of Santa Monica. My general health status is pre-diabetic (6.1 A1C in January, 5.7 as of June) but I am on no medications; currently eating a relatively low-carb diet. Since a hysterectomy seven years ago that damaged my obturator nerve I have had hip pain that has become pretty serious knee inflammation; I’m fairly sure they are linked: when the sacroiliac spasms, the knee flares. Reducing inflammation was my main reason for starting rapamycin, in addition to addressing what seems like recently a complete lack of energy (mitochondrial dysfunction?).
Preliminary labs via HealthSpan showed high lymphs and high hs-CRP, but no other markers of inflammation. All other biomarkers were relatively normal, except enlarged red blood cells. I am compound heterozygous MTHFR, so that was no surprise. (I take nattokinase and serrapeptase on alternate days to address this.) Platelets normal.
I started taking weekly rapamycin @ 2mgs May 14 and May 21. On May 28 and June 4 I went up to 3 mgs. On Jun 6 I developed a purple patch on my forearm under the skin which looked like what some describe as senile pupura. I had never had this happen before, though I do have very thin and dry skin on my forearms. I contacted HealthSpan and they had me suspend rapamycin for two weeks then re-do labs. They were looking for changes in platelet count, but there were none. The spot resolved during this time, and I resumed rapamycin @ 1 mg. on June 21, June 28 and July 5. On July 12 I increased to 2 mgs.
On July 18 I had a sudden nosebleed that lasted for 15 minutes. I have never in my adult life had a nosebleed except once ten years or so ago, and that was a spot of blood on my pillow at a time I was taking nattokinase and baby aspirin. I quit taking the baby aspirin and it never happened again. I contacted my primary care doctor who has my current labs in hand and did not think I had suddenly developed a bleeding disorder; he suggested NSAIDs which I take for my knee (400 mgs. usually not more than once a day) could be responsible. I laid off the NSAIDs that day, took one 200 mg. ibuprofen the next night, none the following day, and the day after that had another nosebleed, relatively minor.
The next three days I did take NSAIDs, again not more than 400 mgs. per day, and today experienced an even worse nosebleed lasting thirty minutes.
Sorry for the excruciating detail, but I am interested to know if anyone else in this group has experienced anything similar, and if so whether it resolved. I should also say that in the past two months I have been experiencing extreme dry mouth at night, to the point that I wake with my tongue stuck to the roof of my mouth, and sometimes it feels like my tongue actually has shriveled. The dry skin on my forearms is worse and now the skin on my knees and lower legs is drying and wrinkling. My daughter, a doctor, speculated that the tissue in my nasal passages may also be dry and causing the nosebleeds. I went on the Mayo Clinic website and read that dry mouth, nosebleed and purple patches under the skin may all be side effects of rapamycin, but I would think they are talking about doses used by organ transplant patients. At any rate, I would appreciate feedback. I will be re-running my labs shortly, but if they don’t reveal a platelet problem, I’m not sure where to go from here. I would hate to have to give up the rapamycin experiment before I have a chance to reap the promised anti-inflammatory benefits, but am wondering if there are just some people who can’t tolerate it and if I am one of those. Any input would be appreciated. Thanks.
I’m not a doctor, just a couple thoughts.
Boswellia is pretty good for joint pain and to reduce inflammation. I’ve increased lately and it does work. If it’s good enough for baby Jesus it’s good enough for me.
I’d get off the NSAIDS, all bad.
You’re taking tiny doses, doubt the Rapa is to blame. I started with either 4 or 6 and noticed the difference in arthritis right away. Everybody is different.
Good Luck,
Yes, dry skin! And flaky! Dry nose, dry mouth.
My only unpleasant side effect from Rapa is the acne. I had a pimple inside my ear canal last week.
Curious what you use Boswellia for, and dosage? Is the mechanism of action known?
It reduces inflammation. Mostly pain in the joints. Also called Frankincense. I take 1000 mg/day. It’s not that expensive.
I could never figure out why they brought baby Jesus Frankincense. What does a baby need with it? I suppose since it is the resin from a rare tree it was valuable. I suppose he didn’t need gold very bad either.
Thanks for the feedback. I am going to see an ENT today but it she does not have other insights, I am forced to believe it’s the rapamycin, especially since I’ve been off of it for 25 days and am no longer waking up with dry mouth. Did your dry symptoms get less with time, or dose, or did you just put up with them?
The problem is that there are lots and lots of interventions that potentially have merit. When it come to joints I have the view that people should take at least 3mg of boron each day. Rapamycin is one of the mitochondrial improvers, but not the only one which will help with everything, but can only go so far.
Rapamycin, however, also has negative effects in holding back cell division. That is why I tend to be on the less frequent (but possibly higher dose) side of the forum.
It is interesting that a pain reliever (frankincense) was highly valued during a time of all natural foods, lots of exercise (no cars, no bikes), and probably low body fat. I guess inflammaging is not just for modern times.
The dry skin, mouth, nose has not improved in the 8 months that I’ve been taking rapa and also includes chapped lips. Just exfoliate & moisturize.
Yes, I got pimples, too, along with dry skin& chapped lips. Small price to pay.
If it were just dry skin I might soldier on, but the frequent nosebleeds aren’t a tolerable side effect for me. The ENT found no sinus-related issues. I think I will do a two-month washout period and perhaps try again with doses every two weeks, starting at 1 mg., and see if it recurs.
@LCB You can use a small amount of vasoline intranasally to moisten the mucosa periodically. Saline nasal spray also works but may require more frequent application. There are also other non-petroleum jelly’s that you could try. Chances are this symptom will resolve over time.
I always get scalp acne after a couple weeks of 5 mg rapamycin with gfj. I have a standing order for doxycycline so this clears it up after a few days of 100-200mg per day. I think the rapa benefit is much better than the acne. My arthritis pain goes away in a week or two after each rapa dose.
I was doing a bit more reading up on the effects of large doses of rapamycin (what is an overdose?)
I found this paper which referred to epistaxis as a known side effect.
Oddly enough I remember having a nosebleed relatively recently, but as I have had nosebleeds from time to time I did not note it in my notes of interesting things that happen (with blood pressure, heart rate etc).
However, it appears that it is a known side effect of large doses. I am slightly pleased by this as it may be a valid symptom of when I took a large dose of rapamycin on 28th July.
I am currently waiting for a transient infection to die down before taking another large dose. I intend taking more frequent blood tests (twice a week) after the dose to watch the values for insulin etc shift and then revert.