I’ve started and stopped rapamycin twice now because of strange stomach pain. The only way I can think to describe it is that it feels like someone has my stomach in their fist and is squeezing. It’s unlike any other stomach pain I’ve experienced. And I also had a noticeable loss of appetite. I was taking 5mg/week, and the pain started after the second dose and seemed to be worse after the third. At that point I stopped, and the pain went away. I took a break and tried again about a month later and the same thing happened.
I really want to take it, so I’m going to try a third time in a few weeks and start with a smaller dose. (Or do you think spacing it out to 5 mg every 10 days or 14 days would be better?) I’m hoping it’s a coincidence since I’ve never heard anyone else report this as a side effect. (I am a woman in my 50s.)
Interesting… Are you starting with all 5mg at once, right away?
I think it may be helpful to start more slowly - I started with 1mg on week One, then 2mg week Two, etc… until I got to 6mg / week. Then I stuck with 6mg for quite some months… then slowly worked up to 10mg/week.
For me that seemed to minimize the side effects (of course, N=1, so take it for what its worth)…
Right now every time I take my dose I get a rash on my wrist - about one inch square… but thats entirely tolerable for now.
Also, you might want to consider your source for the rapamycin. I hope it’s not some kind of toxic impurity causing your side effect, given the lack of reports of stomach pain/cramping in other users.
I definitely thought about that possibility. Two family members have taken their rapamycin from the same lot and been fine, but I know it’s always a possibility. I believe the first dose was checked out through Valisure, but I don’t think we did it for the second lot.
That type of stomach pain might be a food/chemical allergy? Rapa pills are 95% filler. You might have a problem with the mfg / filler in your rapa pills. A guess given it goes away with ceasation of rapa.
I have multiple alergies and am tuning vendors / sources off and on. No scent, no gluten etc. AHH I’ve heard of some mfgers use a gluten / gluten like filler product. IE my thyroid pills.
The day after my 6th dose of 6 mg once a week, I developed a severe headache with severe nausea & sensitivity to odors, & joint pain, specifically back pain–this lasted for about 4-5 hrs and then went away after a dose of the antihistamine chlorpheniramin 4 mg.
I’m thinking about lowering my dose to 5 mg once a week. Anybody else have a reaction like this? I have never had chemo, but it felt like what I would imagine a reaction to chemo would be–intense but short-lived.
I had severe headaches few times too, it often lasted 1~2 days
Usually, Acetaminophen would ameliorate the symptom. If the headache is too strong, I would take Ibuprofen instead
It’s not a big problem to me
It doesn’t tie to any specific situation, I always got headache at 3th~4th day after the day taking rapamycin, but they are mostly very mild.
Only a few times the headache is too strong, with nausea, then I took Ibuprofen
Strangely, recently I just increased my dose to 25mg, but then I had zero side effect, but due to the possible immunosuppression effect in higher dose, I got Staphylococcus infection on my nasal skin however
Hi I am currently on 20 mg every two weeks. I developed a blood shot eye and so I skipped my regular Rapamycin DOSE one week. My bloodshot eye went away on its own with no antibiotics or any other intervention. In one year of taking Rapamycin I have only gotten a sore mouth that went away after one day. I started by taking 1 mg a week and slowly upping my dose by 1 mg a month. I’m going to up my dose to 24 mg every two weeks. I also take metformin 1g., Epicatechin 350mg., daily. And I take pine bark extract three times a week (that is my substitute for aspirin).
I’ve noticed that the only 2 times I got canker sores following a rapamycin dose was when I also consumed some pulp, once in eating a quarter of a grapefruit, and another time eating some pulp present in my grapefruit juice. My rapa dose was estimated at 15-20mg.
Two possibilities: a) contact with the pulp brought out the canker sore, and I have some recollection of this having occurred in the past, years before using rapamycin. Or b) the additional furanocoumarins in the pulp had a much higher inhibitory effect on CYP34A than just the juice and resulted in a much higher effective rapamycin dosage than I had expected.
I’m not sure how to interpret and apply the findings from the following article, but it looks like eating grapefruit might be a far more cost-effective way to increase effective rapa dosage than drinking the juice.
Distribution of furanocoumarins in grapefruit juice fractions
Anyone use methylene blue oral rinse therapy? It’s an effective and inexpensive modality that can be used safely to palliate intractable oral pain in patients with mucositis
After taking rapamycin for 4.5 months (with dosage of 3mg/week for the last 4 weeks), I experienced a mild skin rash which I treated with cortisol cream that seemed to help. I have temporarily stopped the rapa and intend to resume in one or two weeks. Today is the first day without weekly rapamycin and the skin rash has almost disappeared. My wife is also taking rapamycin on the same schedule and had a similar experience with skin irritation.
I started Rapamycin last week at 2Mg/wk. The day of my first dose I felt some weird numbness in my right hand. It went away on its own. Had a bit of sleeplessness night one as well. My second dose I did 3mg today and washed it down with grapefruit juice. I didn’t realize I should have done that an hour in advance and just washed the pills down. The numbness came back today a couple of hours after the dose. It lasted for 30-45 minutes and went away. I also have a slight headache today. I read that numbness can be a side effect (from Mayo) but I haven’t read anyone else here with that symptom.
Does anyone get a headache a day or two after rapamycin use? I noticed some do in the study above but just curious if other users on here have had headaches after use.