A small percentage of patients develop canker sores. This is a transient symptom of taking rapamycin and will usually go away within a week.
the only time i got canker sores is when i took my rapamycin with grapefruit juice.
Skin rash is a quite common side effect as well.
I am suffering from extreme Cankar sores… both sides of mouth, tonuge, etc., I have 7 active now after two weeks of rapamycin. I am going to immediately discontinue use. I can barley eat anything, and it is so painful cannot talk long either and getting headache from the pain.
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I have had mouth sores from Rapamycin for more than a month. Sucks!
Orajel only helps slightly. Anyone else found a better solution?
Hi Steve, this is Kristen with the Clinical Team.
Sorry you are experiencing mouth sores, as these can occur in some patients on Rapamycin. They tend to go away on their own, but some patients find relief using Orajel or L-lysine, which it sounds like you have already tried.
We would recommend pausing Rapamycin for 1-2 weeks for the mouth sores to heal completely. When starting back up you can lower the dose to 2-3 mg/week and then titrate up slowly by 1mg increments every 2-3 weeks until you reach your goal dose, and that usually prevents them from re-occurring. Another option is to spread the dose out to every two weeks vs one week if you find that helps.
If you are not already avoiding chocolate and arginine, it might help to avoid these HSV enhancers… Be well.
Canker sores are not related to HSV. I do suspect that those who deal with recurrent HSV may have resurgence with Rapamycin.
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L-lysine will cure them in a few days. I got them bad for years, 5-6 in my mouth at any given time. Took lysine and after a week they were pretty much gone. First time I was canker sore free in like ten years. Now when I feel one coming on I take a few days of lysine. Try it out!
Canker sores are in ur mouth, not herpes. Tested negative for hsv 1 and 2 but get canker sores and have since I was a child. They are located inside the mouth and are little sores. Not outside pus filled open sores like herpes
I have been taking weekly dose of rapamyacin for 8 months and had no side effects. Then 2 months ago I had an outbreak of shingles. This was the 1st time i had gotten shingles. I questioned whether the rapamycin had an effect on my immune system and contributed to outbreak. There was no info to be found about rapamycin and shingles. Has anybody else had shingles after starting rapamyacin? Does anyone have any data on this?
I had a shingles outbreak last June at the age of 53. I controlled the outbreak with antiviral medicine and it wasn’t too bad, however, I have been experiencing postherpetic neuralgia (PHN) ever since which is worse for me than the original outbreak. While I wasn’t taking rapamycin at the time, I did start taking it three months after, even though I have PHN. My PHN has been SLOWLY improving, but not linearly. I have tried to vary the dose and the timing. The interval has been up to two weeks and as short as five days. I have come to believe that a six day interval at 5mg seems to be most effective, since the longer the interval, the neuralgia gets worse and then gradually improves after I take it.
My take away is that rapamycin seems to improve my immune system, therefore improving the PHN symptoms. The proper dose and interval matters though.
Food for thought.