Hi everyone! Apologies if this has been covered somewhere (I searched the forum and couldn’t find what I’m looking for).
I’m a new rapa user. I’ve been taking 2mg per week for 6 weeks now. (I started with 1mg per week for 3 weeks). The problem is: every time I take it, the next day I develop a cold sore. I’ve always struggled with cold sores (HSV-1), but never so intense and so often. Is this a sign for me to stop rapa temporarily? To lower my dose? Or is this normal and something to power through?
Any feedback/experience will be greatly appreciated!
jeu-de-paume, How are you taking it? Are you using grapefruit juice, olive oil, plain water, a meal, etc. These things may affect how well it is or is not absorbed. For example, grapefruit juice will multiple the absorption rate to around 3.5 times normal absorption. Otherwise, two milligrams certainly doesn’t sound like much. And, no, I’ve not seen this topic referenced anywhere before. I take pills with keto coffee 30 to 60 minutes before food because the oil in the coffee helps with absorption. Others take it with food or a meal, especially a fatty meal like bacon and eggs or the more healthy approach with canned sardines.
jeu-de-paume, It’s just one person’s opinion, but I’d drop the grapefruit juice. I’ve been taking rapamycin for more than one year and I still don’t take it with grapefruit juice, either the night before, the morning before, or with a dose of rapamycin because of grapefruit juice’s ability to multiple the effects greatly. I go for slow consistency of dosing so that any problems experienced will appear slowly and allow me to easily readjust the dosage by the subtraction of a single pill. Even at over one year I have not found the exact dose I feel will be best, but when I do I may experiment with grapefruit juice so I can reduce the number of pills and save a little money.
It’s thought to be cytokine driven. Some herbal extracts like highly absorbable turmeric, ashwagandha, boswellia, limit pro-inflammatory cytokines. I don’t know if it would be enough to help, though. A blend of these three herbs did help to lower cytokine inflammation in covid patients. Made it to Phase III hospital trials.
In the second study below, a dexamethasone oral rinse was suggested as a treatment.
I got my first cold sore right after starting rapamycin too, luckily I just got it this one time even though I went as high as 12mg with grapefruit juice (I weigh around 75-6kg). You could try increasing the dose a few times with more time between doses and see if that works. I’d keep some acyclovir creme ready in case you feel a cold sore coming up
Thank you for sharing your experience (12mg, wow! I thought anything above 7-10mg crosses into ‘transplant’ doses? But I guess it must be individual too. Update: oh I see, you mean 12mg if you count the juice in!)
Yeah, I’ve exhausted all my acyclovir supplies (pills and creme) since I started rapamycin! I normally store on those when I go to visit my family in Russia, since acyclovir is OTC there. I had about a year worth left, I thought! But it all melted within 2 months
Luckily I’ve found a couple of Slavic online pharmacies in the US, which will sell Ukrainian and Russian acyclovir/penciclovir meds without prescription.
Do i recall correctly that cold sores were at or near the top of the list of self-reported side effects for our group? I reported about a 3-fold increase in incidence (labial) in an earlier survey for our group. I’m 190lb and had been taking a once weekly 2mg dose with grapefruit juice. The increased incidence occured a month or two after initiating Rapa. Not immediately. Now I take 2g of valacyclovir at the same time as the rapamycin but cannot report results yet. As discussed here by others, an increased incidence of labial cold sores might increase the risk of neurodegenerative disease based on various uncontrolled and cross-sectional reports. FWIW i have changed my dose to 4mg Rapa without grapefruit juice plus concomitant 2g valocyclivir. As an APO-e4/e3 genotype and with a rare seizure condition, having an increased risk of cold sores on this regimen will cause me to reduce the dose further, possibly to stop if it still increases my cold sore incidence.
“More than half of American adults have HSV-1. Around 30% of people who have oral herpes may experience recurrent outbreaks of cold sores.”
It really would be interesting if forum members who consistently get cold sores after taking rapamycin would get an HSV-1 test.
I would like to confirm my theory that this latent virus flares up when the immune system is suppressed by rapamycin.
Actually, on further review, you probably don’t need to take the test. If you have actual cold sores, not cankers, then you almost certainly have Herpes HSV-1 which flares up when you take rapamycin and temporarily suppresses the immune system. In this case, you will just have to tolerate it if you plan to keep taking rapamycin. If in doubt you can always take the test.
Interesting. I have been on a low dose of rapa (2mg/week) for nearly a year. Recently noticed a “cold sore” on my lower lip. Just as that one healed, one appeared on my upper lip. I used to get cold sores when younger but I reckon it must be 20 years since I had one!
Anyway I have had 4 weeks “off” rapa during December.
If the herpes returns early 2023 after I resume rapa then I can assume a connection.
Cold sores are usually located on the lip, OUTSIDE the mouth and are from Herpes virus. Canker sores, also known as aphthous ulcers, are located INSIDE the mouth, on mucous membranes. I have not had either of these from taking Rapa, but I do sometimes get small cysts inside my mouth.