#81

Thanks for sharing, if I would get mouth sores repeatedly I would probably take a break until it has healed and lowered the dose. We people work differently and it may be that you tried to push things too fast or that you only tolerate low doses. I have been taking Rapamycin for more than one year and it seems like the mouth sores are not coming anymore but lets see how things develop. Maybe my body has adapted to Rapamycin but in the beginning I felt more side effects.

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#82

Agree, I feel the same re acne. At first it was quite significant and now a non-issue but perhaps I’ve just learned to prevent it.

#83

I just got them for the first time after a long while settling on 4mg+gfj per week (also having taken much higher doses) if by mouth sores you mean erosive stomatitis. No idea why, I didn’t change much else except that I have increased my cycle training over the last half year (interestingly when I skipped hrv4training gave me a whopping 30W or 11% increase in estimated FTP)

#84

When are folks getting the mouth sores? For me, it’s usually 5-6 days after dosing. So I’m wondering if it’s the peak or the trough that causes the issue.

I take with fatty meal and grapefruit (1 whole fruit), 6mg, F, 142#, 40 years old.

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#85

Elizabeth, do you realize you are taking one of the highest doses (per weight) that anyone here has ever taken? 6mg with grapefruit and a fatty meal is likely something like 25 to 32mg equivalent rapamycin dosing, and you’re only 142 lbs. So by body weight thats like the men here taking 40mg to 60mg - are you doing this every week? Most women here take 3mg to 5mg per week.

And you’re young - only 40, so the risk/reward profile is different than if you’re 70 years old taking this high dose. If I were you I’d be really careful about using such high doses, and take frequent breaks.

Have you read all the dosing information in these threads?

Are you doing blood tests to track possible blood lipid and blood sugar problems that are likely to occur at such high doses and frequency?

You also need to be very careful with immune system suppression at that dosing level.

Rapamycin is not a risk-free drug, especially as you increase doses above the regular 5 to 8mg dosing once per week level. There is at least one case when a young woman died from infection from taking high doses. See below (this was using everolimus, which is a “rapalog” and functions identically to rapamycin in effect…

The most common Adverse Effects (AEs) of everolimus therapy were laboratory abnormalities (100% of patients) and infection complications (83 episodes in 15 patients). Infectious episodes of pharyngitis (67%), diarrhea (44%), stomatitis (39%), and bronchitis (39%) were the most common infections. They were mostly mild or moderate in severity (grade 1–2).

In two cases, life-threatening conditions related to mTOR inhibitor treatment were encountered. The first was classified as grade 4 pleuropneumonia and Streptococcus pneumoniae sepsis, whereas the second was classified as death related to AE (grade 5) Escherichia coli sepsis.

A 27-year-old woman with TSC was started on everolimus
treatment because of AML of the left kidney
(60 Å~ 48 Å~ 36mm in size). The other signs of TSC were
facial angiofibroma, hypomelanotic macules of the skin,
and shagreen patch. The diagnosis of TSC was made
12 years earlier when the patient underwent nephrectomy
because of a large tumor of the right kidney. The
patient received everolimus at a dose 10 mg/day and the
trough concentrations of the drug ranged from 4.08 to
5.08 ng/ml. After 3 months of everolimus therapy, a
reduction in AML was observed (40 Å~ 31 Å~ 20mm in
size). During treatment, hypercholesterolemia (309 mg/
dl) and transient leukopenia (3.2 Å~ 109/l) with neutropenia
(1.34 Å~ 109/l) was observed. She also reported
oligomenorrhea. After a gynecological consultation, a
functional ovarian cyst was identified and contraceptives
were prescribed. However, 2 weeks later, she was
admitted to the gynecological unit because of subabdominal
pain and an ovarian cyst (64 Å~ 53mm in seize)
on ultrasound examination. Torsion of the ovarian cyst
was suspected. On the day of admission, WBC was
9.2 Å~ 109/l, the absolute neutrophil count (ANC) was
6.6 Å~ 109/l, the hemoglobin level was 10.8 mg/dl, the
PLT count was − 275 Å~ 109/l, and the C-reactive protein
concentration was 8.0 mg/dl (normal < 5.0 mg/dl). The
patient was advised to continue intake of contraceptives
and everolimus. The next day, the general condition of
the patient aggravated. Her blood pressure was low (85-
/50mmHg). Her WBC and ANC decreased (WBC
−2.4 Å~ 109/l, ANC − 1.8 Å~ 109/l), whereas the hemoglobin
level (11.0 g/dl), the PLT count (185 Å~ 109/l), and coagulation
tests were normal. Computed tomography of the
abdomen and pelvis showed AML of the left kidney (size
as in the previous examination), an ovarian cyst measuring
65 Å~ 50 Å~ 40 mm, and fluid in the retroperitoneal
space with density of the blood. Further aggravation of
her general condition was observed. The patient was
transferred to the ICU and she died after 2 h with
symptoms of shock and multiorgan failure. Blood and
urine cultures collected when she was in the ICU were
positive for Escherichia coli.

Complications of mammalian target of rapamycin inhibitor anticancer treatment among patients with tuberous sclerosis complex are common and occasionally life-threatening

https://sci-hub.se/10.1097/CAD.0000000000000207

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#86

What happens is that Rapamycin inhibits your body from making white blood cells. Hence when there is an infection there are fewer cell available to fight it.

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#87

I appreciate the thoughtful reply. This is under the supervision of my OB GYN and rheumatologist. I’m not doing it for longevity, but to preserve fertility in the hopes of having another kid. My bloodwork has been monitored and everything looks good (just got it back a few weeks ago), I’ve only got mouth sores twice since Oct (I haven’t even got a cold since starting and my RA has calmed down considerably). 6mg is by far the standard dose I’ve seen online including this website. I’m ending the experiment in March when I test my AMH again.

#88

Also all the grapefruit rapa combo studies that I found we’re doing multiple days of grapefruit juice (1 cup), so the math for fresh fruit (less than 0.5 cup juice) once would not be be the equivalent multiplier any ways.

If I start to see any other symptoms besides mouth sores trust me, I will be the first to back off. I’ve seen several posts of people describing regimes of increasing levels of rapa (much higher than mine) until digestive woes were felt :sweat_smile:

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#89

In this study a single glass of grapefruit juice results in a 3.5X increase in equivalent rapamycin dose.

A glass a day of grapefruit juice lets patients derive the same benefits from an anti-cancer drug as they would get from more than three times as much of the drug by itself, according to a new clinical trial. The combination could help patients avoid side effects associated with high doses of the drug and reduce the cost of the medication. Source: Grapefruit juice lets patients take lower dose of cancer drug - UChicago Medicine

  1. Studies have shown that taking rapamycin with grapefruit juice (from frozen concentrate, in the study), you can get on average a 350% increase in bioavailability . This suggests that instead of 3.5 mg of rapamycin, you could instead take just a single 1mg tablet with grapefruit juice (GFJ) to get the same “effective dose” of rapamycin. (Note: that is, the multiplier is 3.5X the dose you take). But there seems to be significant variation in the effectiveness of different grapefruit juice types (fresh, frozen, etc. - suggested in the paper), and in each individual’s biology and resulting blood/sirolimus levels that result in this scenario - so there is significant uncertainty in this approach. WARNING: Some people here in our forums are reporting as much as a 7X multiplier using grapefruit, so you could be getting 3 to 7 times higher dose of rapamycin with grapefruit (or higher), so be careful. It seems that the best time to take the grapefruit juice (or eat a grapefruit) is about 1 hour prior to taking the rapamycin (based on this information). There are some important considerations and limitations - so read more down below before you jump into doing this.
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#90

Have you done any blood sirolimus level tests? See: How to get a Rapamycin (sirolimus) Blood Level Test

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