Side Effects of Rapamycin (part 2)

Are you aware of any tickbite? If so, and if it is expanding, then I think of lyme disease.

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Chris - I have not taken Metformin for over a year. My gut doesnā€™t do well with it, so I stopped completely.

Instead, I have done Acarbose since November 2022 and no issues.

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With the caveat that this is only my understanding, if itā€™s one of the various herpes, yes, it will go away on its own eventually, but waiting for that might not be any fun at all, especially if itā€™s shingles, which is, Iā€™m told, a nightmare of discomfort. (also, if itā€™s herpes, youā€™re contact-contagious, so be careful who you touch.)

I am not a doctor (though as I recall we have a few of them around, and maybe theyā€™ll weigh in), so you should take anything I say with a huge grapefruit (heh), but Iā€™m surprised that your doc didnā€™t even raise the possibility that it might be herpes, with the itching extending through the forearm (herpes travels along nerves) that you reported.

Anyway, herpes anti-viral meds are Rx, so your doc would need to be involved to get you the Rx.

Keep us posted?

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I took all the meds my doctor gave me as well as two topical creams. The itchiness is gone along with the swelling. It still looks ugly, but if I donā€™t think about it, I donā€™t notice it. Hopefully it goes away quickly.

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The rash has improved greatly. The anti inflammatory and anti allergy meds worked well. It is well on its way to healing. It appears it is not a bacterial infection as there is no pain or puss. I still have no clue what it is, but it probably involves an allergic reaction.

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The SPRINT trial finds that even people >75 can benefit from not just blood pressure control, but intensive BP control.

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Has someone else experienced an increase sensitivity to coffee? I could tolerate a couple of coffees in the morning, now if I drink one that is a tad too strong I canā€™t sleep and my heart rate stay elevate throughout the night.

It is me getting old or something to do with rapa?

If anything, I have felt the opposite. Coffee seems to be having less of an effect on me.

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You could try D-Ribose. This came from here I think:

D-ribose ā€“ An additive with caffeine

https://sci-hub.se/10.1016/j.mehy.2008.12.038

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Thank you for this: I started 4 days ago with 1 mg ( Pfizer) with some fat soja yoghurt and I got a disgusting and painful skin infection on my left buttocks , with skin around very low red too and with gland swollen on same side and some painful spots on leg skin on the same side ( without - touch wood- infection so far ) , will try as you suggest. still having diarrhoea and less appetite ( which I donā€™t mind) and bad sleep : waking up around each hour besides last night when I managed to sleep around 2 hours in a row each time) first days also had headache and soar throat but that seems to be gonešŸ™. I exercised once so far and still sore but that may be coincidence. Also my period seems to be delayed (6 days so far) - am 46 yr old female

Considering all this, I wonder whether I shouldnā€™t wait at least 2 weeks (if skin has cleared by then?) or until skin totally healed ? to take next 1 mg ? Thank you for any advice you may have :pray:

Update :
After a 5 week break ( still tiny rash on my buttocks) , 2 days ago I took my second 1 mg of rapamune but later in day , with food and this time so far so good ( just some sleep issues and night sweats ) so I may continue next week :crossed_fingers:my period never came though, letā€™s see the following weeksā€¦

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I would wait for two weeks at least for the skin to healā€¦ perhaps longer if it isnā€™t entirely healed. I used to get a rash under my fitbit whenever I took rapamycin. It would barely heal before the next dose and it then returned. I ended up stopping wearing the fitbit because of it, but people have suggested I might have benefited by disinfecting the fitbit strap.

You seem to be very sensitive to rapamycin from your reactions at 1mg. Iā€™ve gone as high as 28 mg and never had any side effects like you have had.

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Thank you - i was wondering whether females may have more issues ( although from what I read on the blog it didnā€™t seem too). I just woke up and see I have a new outbreak next to the first one ( which is somewhat better but still pretty ugly :woman_facepalming:t2:) the capsules I bought are 1 mg so I cannot go lower. are you taking the Pfizer ones? Thanks so much

Bicep, Thanks for the D-ribose article. Have you used D-ribose with coffee? If so, how much and have you noticed any benefit? Thanks.

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I just took my first dose of 1mg 2 days ago and have identical poor sleep side effects -ā€œchoppyā€ sleep, more awake between sleep cycles, but at least get back to sleep. I was hoping it was only that 1st night, but nope, just awoke from my 2nd night of sleep after 1mg and it, too, was the same ā€œchoppyā€ night of sleep.

Iā€™d love to know if my deeper sleep stages & REM are reduced with real data, it sure feels like it in the morning.
I also woke up with a slight headache the past 2 mornings, but none of the skin infection or diarrhea side effects. I was planning to use it every 2 weeks before I knew how it responded in my body. With this sensitivity to it, Iā€™m probably going to wait another 2 weeks, and take 1mg again instead of upping it to 2mg.

In an effort to improve sleep tonight, I might try 1-2mg of melatonin tonight, magnesium, and not drink my typical cup of coffee this morning (ugh!). I am very sensitive to caffeine and only drink my coffee before 9AM, otherwise, it impacts my sleep. So, as others have suggested, does Rapaā€™s stimulating effect combined with the stimulating effect (& long half-life) of caffeine too much for my body to relax at night?

Hmmmmā€¦. Considering sleep is so goddamn important, Iā€™m not liking how itā€™s affecting it negatively. Then again, I have no real data to prove itā€™s negative, but it sure feels like it.

Does anyone have any suggestions to improve sleep after the initial introduction of our bodies to this molecule? Iā€™m going to exercise (again) & skip coffee and hope that helps.

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Autophagy disrupts circadian proteins. I am not quite sure which proteins. I have found Rapamycin to disrupt sleep. I use a lot of melatonin and my sleep more recently (after 3 doses of Rapamycin on separate occasions, but lots of other interventions as well) has been improved.

Firstly when it comes to melatonin try to get some time release melatonin and take it as you go to sleep. Ideally you want it to release whilst you are asleep to keep yourself asleep.

When you wake during the night you need to try to reduce cortisol levels and move the balance of your nervous system towards the parasympathetic systems.

Possible solutions:
a) Breathwork (physiological sigh or box breathing or similar)
b) Allogrooming, ideally get someone to rub your back gently or your torso. I have been trying this slowly and gently rubbing my skin because my wife is generally asleep and I wonā€™t wake her. This has an effect on the PHA axis and reduces cortisol. It should stimulate the c tactile afferent cells.
c) Lie on the right side of your body. This is normally where the vagus nerve is.
d) A splash of cold water on your face
e) NSDR (non sleep deep rest also similarly Yoga Nidra).

I am currently wearing a CGM and I find it interesting how my blood sugar increases slightly when I have the cortisol awakening response at 2am. (I want it at 6am-7am ideally)

Taking melatonin sublingually to return to sleep is also something that can help.

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My sleep is gradually improving : after 3 nights waking up every hour , the fourth night it went to 2 hours more or less and yesterday ( without taking my melatonin nor magnesium, as I figured it doesnā€™t help anyway ) I actually slept better and only woke up a few times ( which felt as a huge difference already :sweat_smile: so confident it will be all right soon )

So hang in there

I am also very caffeine sensitive but didnā€™t manage to not drink a cup in morning ; next time I might try to quit the day I take the next mg; good suggestion

Still no period

The most annoying thing for me is the skin: the location of the rash ( mainly buttocks; although I also spotted yesterday spots such as on a picture that someone shared, look a bit like insect bites so I can live with those too) is painful ( besides terribly ugly ) and I think maybe skin touches while sitting on it and that is why itā€™s spreading

Thanks a lot for solutions; looking them up ! If anyone has a magic thing that worked on skin rash and that has not been mentioned on the blog yet , thanks so much for sharing :pray:

I definitely donā€™t sleep as well the day I take my Rapa dose. The second night is usually fine. I initially took 2mg with grapefruit and that kept me awake most of the night. I do drink a lot of tea, and I noticed that if I reduce caffeine the day I take it and also keep caffeine consumption to the earlier part of the day it helps a lot. I since switched to 1mg with grapefruit (an effective dose of 4-7mg?) and I have no side effects at all. Sleep is good on the first night, but I seem to sleep less and I have plenty of energy the next day. Sleep patterns and lifestyle are so varied from person to person, so Iā€™d imagine Rapa impacts everyone differently. Good luck!

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Anyone feel the sides change over time?

At first, I had some trouble sleeping the first night. Now, if anything I feel I sleep a bit deeper.

Been on rapa 5mg + absorption enhancer 1x/wk since December.

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My caffeine story is crazy. I get migraine type headaches when I have it. It hurts so much I actually quit all chocolate and tea and caffeinated beverages for decades at a time. Once in a while I check with some chocolate and sure enough, punished again. So I pretty much check the studies and keep my eyes open looking for what the trouble could be.

When I saw that article I bought some d-ribose and it made me feel better. Seldom do supps of any kind actually do that. So I had some chocolate and no problem. Had more yet and still no problem. I canā€™t believe it.

Iā€™m doing the D-Ribose, Trehalose, Modified Citrus Pectin thing now on an empty stomach every morning. Hell of a thing. But I canā€™t remember where I read the story. Much of my stuff comes from people on here.

Maybe I need something for my memory now! Lol.

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