Do side effects get better over time? :(

#1

.

hello, all :slight_smile: - my very first post, here! -

…so, let me begin by saying, that …maybe …i caused this, by increasing my dosage too fast :frowning: -

i increased my rapamycin dosage by 2mg per week - began, november 29, with 2mg ; the next week, 4mg ; the following week, 6mg,

and that’s where i’ve been maintaining,

…but i am having a tough time, staying the course, my friends! -

first of all, i did get the “mouth sore(s)” that i had read to expect from rapamycin, the first week.

(and i also developed a very serious skin infection -

it was a tiny cyst that i tried to squeeze, and,

it blew up to the SIZE OF MY HAND,

and i had no choice but to take TEN DAYS of amoxicillin :frowning:

…and am now worried about antibiotic resistance… sigh…

but, thankfully, i pray the cyst has gone away…)

but, now…

i very suddenly developed mouth/TEETH(?)/EAR(?)/LYMPH(?) woes -

(i repeat) very suddenly, about 4 days ago, i developed, what,

…i can’t tell whether is a TOOTHACHE in my LOWER RIGHT WISDOM TOOTH that came out of nowhere (and i am Not prone to toothaches, nor did i have any noticeable incident of, like, biting down and causing anything sudden like this),

(i’ve also had, come on, painful sensitivity of all my teeth -

all the front/side surfaces of my UPPER teeth are BURNING, especially in the mornings,

and the LOWER, BACK teeth [i think it’s only the lower, back teeth] are sensitive to cold or sweets :frowning: )

or, an EAR ACHE: …i Did have a fairly recent MRI which showed some “opacification of the mastoid air cells,” and i have a terrible pain of the BONY BUMP BEHIND THE EAR,

and …VERY TENDER NECK LYMPH GLANDS :frowning:

…for those of you who are experienced rapa users,

did/do you have these type of issues, beyond “mouth sores”? -

and did you find that the issue was a TOOTHACHE - or, EAR ache (and tender lymph glands from that)?

and, if it was a TOOTHACHE, especially,

did you find that you then required …dental fillings, as a result? :frowning:

i really am praying that i did not "get a dental cavity, from rapamycin :frowning:

or, if it Was a toothache, did it at least go away if you stopped or dosed less frequently?

…or maybe it’s an ear/nearby to the ear bone issue - and i was thinking to do some Lugol’s Iodine to try to help it?

…i can’t really afford to go to a dentist (out of pocket), so i was thinking to start with my ear, nose & throat dr., if you kind folk report that your side effects did not go away on their own :frowning:

…i am really suffering, so any guidance would be dearly, dearly appreciated!

…i would be really sad if i have to stop the rapamycin, i am so hoping it can, in other waus, help my health…

thanks to anyone who read my post, and for if anyone can find the time to reply :slight_smile:

wishing all, the best of health!!!

hope

.

2 Likes
#2

Welcome and I’m glad you posted.

I will let others who are more knowledgeable respond, but in the meantime, you did not cause this! Many here have gone up in dosage that ‘quickly’ and did not have your terrible side effects.

From what I’ve learned from some others, one might get a random side effect one time and then never again. And one person might get the same side effect on 1mg and then not on 6mg, for example. It seems to be random, from what I can gather.

I had a mild mouth ulcer one time and never again.
If you supplement with lysine, it might help prevent them in the future.

I’ve noticed there are a handful of people on here who don’t seem to do well with regular dosing, but with trial and error, many find a way to still incorporate rapa.

I hope things get better for you very quickly!!!

1 Like
#3

Rapamycin is known to be an immune suppressant. I have stopped my high dose (higher than probably everyone else on this forum) until my WBC picks up again.

The problem is that these sorts of interventions are best applied on a cyclic basis.

I am waiting for a blood test from Thursday ATM. Hopefully everything will be in line for my next dose. (which is the equivalent of 77mg without accelerators)

1 Like
#4

You should stop taking rapamycin

2 Likes
#5

Welcome to the forum, although I wish it wasn’t under these unfortunate circumstances.

How long have you had this pain now? And have you noticed a rash on your face or neck area? Also, are all symptoms on the same side of your head, i.e. left or right side? I’m asking because I had very similar symptoms, unrelated to rapamycin, and it ended up being shingles :frowning_face:

At first I thought I had an abscessed tooth, and separately an ear infection, pain was very severe. I was thinking of going to a dentist or ear specialist. And a few days later, the rash appeared. Saw my primary and he immediately diagnosis shingles and put me on antivirals.

4 Likes
#6

No issues of any kind taking 10 mg weekly for 5 years, 150 pounds body weight. Based on your issues, you may consider obtaining medical advice and stopping rapamycin for now.

3 Likes
#7

(hi :slight_smile: and thanks for responding …and actually, yes all the symtoms are on my right side (for 4-5 days now) …but no rash so far–God willing!,

but i will be wary of a rash now!

i’m so sorry that you went through that!, and glad you’re okay! Hugs :))

2 Likes
#8

Lower the dose ASAP! Take a break. It’s probably shingles triggered by too rapid immune suppression by Rapamycin.

4 Likes
#9

It’s possible, though unlikely, that rapamycin as an immune suppressant activated the dormant virus, and you’ll see shingles. I don’t know your age and vaccination status, but regardless I would stop the rapamycin for 3-4 months and then rechallenge. If it happens again, you have your answer - it’s the rapamycin. At that point you have to decide if you are not a good rapamycin candidate, or try a different dosage and timing protocol. Hope you’re feeling better soon!

3 Likes
#10

Go back to 2 mg per week, I even respond very well to 1 mg per week

3 Likes
#11

thanks @LaraPro and @nikney (as a new user I’m only allowed to tag 2 other users per post, so I have to make separate posts to thank you all, forgive me :))

#12

thanks @CronosTempi and @JKPrime (as a new user I’m only allowed to tag 2 other users per post, so i will have to make separate posts …forgive me :))

#13

thanks, @Evervital and @matthost (as a new user I’m only allowed to tag 2 other users per post, so i will have to make separate posts …forgive me :))

#14

thanks @John_Hemming and @Beth (as a new user I am only allowed to tag 2 other users per post, so i have to make separate posts …forgive me :))

#15

If I were you , I would STOP taking it ! No matter how benign a medication is, if it isn’t right for you, you must pay attention to what it’s doing to your body and if it’s not tolerable you have to accept that Rapamycin isn’t right for you ! One if my friends reported zero effect , positive or negative . I told him the same thing. Stop taking it .
Even tho the pharmacodynamics of a drug is well studied and outlined w large clinical trials ( which is not the case w this drug ) there will be individual responses that do not follow the norm.

1 Like
#16

thanks, @nancyahnmd …i have ordered some monolaurin pellets and am going to see if it helps me…

(Re: that if something isn’t causing any effect, negative or positive, if something wasn’t causing side effects, but just not causing noticeable benefit, i don’t see any problem with continuing, unless maybe it’s expensive, or one feels burdened by taking so many supplements…)

#17

Yes, I agree. If I feel and see/measure nothing on rapamycin… I’ll continue to take it! I just took my first 3mg dose of rapamycin this Saturday 01/04/25 at noon. I have felt absolutely no difference up until today, late evening 01/06/25. I’ll keep upping the dose by 1mg a week, and when I reach 6mg, I’ll continue at that dose weekly for 2-3 months, and then get a whole bunch of blood tests. Then I’ll reevaluate. I might push it up to 8mg, or even 10mg weekly, but not higher. I will look for test results, biomarkers, and observation to make my final selection of dose per week 6-10mg. But things might change with time, perhaps after a few months I might find a different schedule or dose with better results, perhaps rapa vacations - the latter will be forced on me, because I’ll have some dental surgery related to implants in 2025, so I’ll be taking breaks from rapa around those procedures. We’ll see.

#18

good luck, @CronosTempi ! - keep us posted how it goes for you - and i will post back here, whether the monolaurin helped me…

1 Like