I have started sketching on a new summary image over the side effect profile for rapamycin. I really would like to get a better grip of it and how to minimize the potential side effects. First step is to get an feeling of what you all have experienced in your different rapamycin journeys. Please add a comment with the side effect number or numbers which you have felt. If there is a side effect missing just add that to the comment. If you haven’t felt any side effect of rapamycin please add a comment on that also.
Mouth Ulcer about 30 days after working up from 2mg to 4mg Rapa.
Skipped two weeks started back on dose and no more ulcer.
Skin rash at about at 5 months on neck and shoulder when I added 10 oz of GFJ.
Stopped Rapa for 30 days then resumed the 4 mg with GFJ.
Skin rash has not returned, been 3 months back on Rapa.
Really great notes you have done here! Big thumbs up for that! How fast did you get the mouth ulcer after taking rapamycin? Was it the same day of the dosing and how long did the mouth ulcers last?
My plan is to follow that dosing protocol to ease up the dose. It will be interesting to see if I get it also around 4mg. What brand and manufacture is it on your rapamycin package? Mine is Rapamune from Pfizer. Would be interesting to try to see if different brands give less or more side effects.
When you got your mouth ulcer did you take it on empty stomach? Morning, day or evening?
The brand is Biocon from India.
I did take it in morning, do not eat breakfast but had two cups of coffee.
I fasted till around 5 pm then had small meal with glass of red wine.
Noticed the ulcer on the third day after taking the second dose of 4 mg Rapa. So had two doses of 4 mg before the ulcer showed up.
I believe that the people who get mouth sores probably have an underlying herpes simplex virus in their system. If you have ever had a cold sore you probably harbor this virus. Once you have had a cold sore you are never free of the virus and a weakened immune system caused by rapamycin probably causes an outbreak in the form of mouth sores. The virus normally lies dormant. “The virus can be reactivated from this latent state”
When I read about many members taking rapamycin and getting mouth sores, I wondered why I have never experienced them at any dose or frequency.
I later occurred to me that I have never had any “cold sores” or mouth ulcers, therefore I believe I don’t have any dormant viruses that are activated by the immune system.
This is just a thought and supposition on my part.
Maybe I haven’t kissed enough people.
I agree with you desertshores. I am at 5 mg rapa with grapefruit juice = 15 and no side effects as of yet. I started at 1 mg, 2mg, 3mg, then adding grapefruit juice, 4 mg and now 5. I have never had a cold sore so perhaps I don’t have the dormant virus.
