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.
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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,
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