Aphthous ulcers seem to be a frequent topic for new users of rapamycin. As a new user (2nd week) and having read so many accounts of these ulcers, could they be related to “linger time” in the mouth. For example, I pop my morning meds in my mouth and may not swallow them for 45 - 60 sec while I pour my coffee. After reading about the mouth/cheek/palate ulcers, I decided to keep the “linger time” as short as possible, just a second or two. Any thoughts on this?
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The rapa tablets are enteric coated so that they can make it past the stomach acid. I doubt your short linger time would have any affect at all. I don’t know why you have to do it… but doubt it matters.
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Yes, I agree with bicep, I have had mouth sores but I always swallow.with water quickly.
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The connection between rapamycin and apthous ulcers has fascinated and pained me for sometime, especially since we still do not know t he exact cause. The main theory is that since rapa inhibits the immune system, especially T cells, this makes the oral mucosa more vulnerable to infection. But since I don’t get them on a low rapamycin dose, my working theory is that only when the dosage is high enough to inhibit MtorC2 that they appear. If I stay at 7 mg per one week dose I don’t get them anymore Of course, YMMV.
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Aside from the annoyance factor, there seems to be an association between immune dysregulation and the occurrence of aphthous ulcers. I decided that I would titrate my dose/frequency to avoid the issue and may have settled, after a year of fiddling, with 3 mg every three weeks. One was the high annoyance factor, and the other is that if rapamycin exposure is mechanistically related to immune dysregulation in some individuals, which granted is still an “if,” I’d rather be conservative until more is known about the issue.
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I can’t wait for someone to fully explain the mystery of aphthous ulcers!
After nearly three years of using Rapa I have a reasonable notion of when the aphthous ulcers occur for me. It’s somewhere between 6mg and 7mg, from a Rapa offset of zero. 8mg guarantees ulcers and they can be horrible. I’ve worked out how to make them less annoying but all the same, I’d like to test myself at slightly higher levels of Rapa without their torture.
From everything I’ve read on the science and what I’ve deduced from this site ,and notables like MK, PA, etc. aphthous ulcers are a good indication that MTOR regulation has kicked in. The length of time the ulcers persist is, for me 6/7 days which inevitably forces a Rapa holiday.
I’m going to experiment with 4mg day one, then 1mg each of the following 6 days to see if this keeps me in autophagy for longer. Given the half-life of Rapa, my peak will stay under 4.5 throughout the week, and I will then take 3 weeks off.
What do people think of taking folate to help prevent aphthous ulcers? I take folate every day, I have not had any canker sores (yet) but I am a fairly new user on 2mg Rapa per week. I have only looked briefly at the literature and might have missed something conclusive on folate being helpful or not.
What concerns me is evidence that aphthous ulcers may be related to autoimmune reactions as noted here . By extension, if rapamycin at particular doses/frequency can provoke an autoimmune reaction, I would prefer to avoid it since there there may be other organs involved in addition to buccal mucosa. Other evidence suggests that recurrent aphthous stomatitis (RAS) is associated with a risk for several different cancers. Once could argue I am overly concerned by this, but everyone has a different risk threshold. Taken together, I surmise that RAS while on rapamycin may signal a certain degree of immune dysfunction. If true, I would definitely want to avoid it. I continue to take rapamycin of course, but at a dose/frequency that is tolerated without RAS. Longer term randomized control trials in otherwise healthy people targeting ageing measures and ageing related biomarkers may provide better insights into both efficacy and risks.
Does anyone else think rapamycins immune suppression activates herpes simplex virus (HSV), which most people carry?
"According to NCBI, about 90% of people worldwide have one or both types of HSV. In the United States, studies suggest that up to 85% of people have HSV-1 by the time they are in their 60s, and 50–80% of American adults have oral herpes (HSV-1)"
This would explain why some users of rapamycin never get mouth sores.
Is there a simple, cheap test your doctor can order to see if you have it?
Typical LabCorp cost for PCR for HSV I and II is ~$300, best I can find. They don’t advertise their prices.
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95% sure! I get a cold sore every year or two (but if I feel a tingle, I take lysine and it nips it in the bud). As soon as I took my first big dose (6mg), I got the tingle… I know take daily lysine as a preventative … could have been a coincidence but I highly doubt it
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Yes, I completely agree that stimulating aphthous ulcers (AU) is highly undesirable and I understand your caution.
The paper discusses a strong indication that “Recurrent” Aphthous Sores (RAS) are an early sign of systemic autoimmune disease. Rapamycin clearly stimulates AU in many people but I’m not sure that it would cause a chronic or recurrent condition without repeating the dose that caused it? It hasn’t for me.
My AU is not recurrent from Rapamycin. I have established a 6mg limit and I keep to it.
Certainly, increasing our risk of Graves’ disease, Hashimoto thyroiditis, SLE, AS, gout, RA, and Behcet’s disease is highly undesirable.
Hi DS, I’m one of the 90% and get cold sores when I’m run down or overly exposed to the sun. If I take Lysine, or better still Famciclovir, straight away, cold sores are stopped in their tracks. However, I don’y think I’ve ever had a cold sore while effected by rapamycin.
I’m not clear on your thinking here, “This would explain why some users of rapamycin never get mouth sores.” How so?