Rapamycin: How to handle mouth sores

:+1: Do you remember which brand he uses?

No clue about the brand he uses, but I donā€™t think the brand matters as long as it is pure tea tree oil.

To add he also uses a CoQ10 gel for his gums. Couldnā€™t find a brand for this, perhaps heā€™s getting it compounded.

5 Likes

Picking up on the lysine comments, I suffered from mouth sores regularly before rapamycin use and a dentist recommended leucine to me which, as folks here know, activates mtor. I upped my overall protein intake, mostly to build more of a muscle resevere as I get older, and the mouth sores went away. They came back with Rapamycin use at 8mg/week (but not at 6mg/week). Net, Iā€™m not surprised at the mouth sore connection to mtor activity. Iā€™ve been managing it through dosage adjustment and/or a break.

2 Likes

When do you take leucine? Every day? Do you take it the exact same time also when you take your rapamycin dose?

I spent some time looking at the research on Essential Oils. Some of them such as Thymol, Carvacrol and Tea Tree are quite effective in terms of fighting infection. Oddly enough both Thymol and Carvacrol have the same formula C10H14O.

I have found sucking Melatonin is good for reducing oral inflammation.

1 Like

I donā€™t take leucine as a separate supplement. I increased protein consumption overall to 1g per pound of lean body mass, using a protein shake and animal protein, so Iā€™m getting leucine through that. The protein is spread fairly evenly throughout the day across three meals. I keep that same routine each day, including the days I take rapa.

The only time I got mouth sores was when I started using rapa toothpaste. They went away after a few days of lysine 2g/day

1 Like

This article is contradictory. It says ā€œContrary to popular belief, canker sores are not the outcome of bacterial or viral infections and are not at all contagious.ā€ It then lists 8 potential causes which includes viral infections. One possible cause listed is an ā€œimmune system problemā€. These ā€œcausesā€ appear to be catalysts. No one knows the actual ā€œcauseā€.
An immune system problem is not necessarily ā€œautoimmuneā€. I personally have had chronic mouth sores happening approx every 3 to 4 months for decades until recently. I have a had severe overgrowth of viruses like EBV and herpes. My particular problem turned out to be an immune deficiency with regards to certain classes of viruses. This is not autoimmune. The protocol I am on with anti viral meds for prevention has cleared this issue for me. HOWEVER, I am not and have never used rapamycin, so this note is just about mouth sores, not necessarily those experienced in concert with rapamycin treatments. It seems logical to me that rapamycin might affect individuals differently because their immune systems are so different. Most people are exposed to Herpes and EBV, but only some develop recurring chronic issues.

3 Likes

Try Acyclovir perhaps. ?? Viruses like Hepes Simplex (HSV-1) are common in the population, although most people donā€™t develop recurring symptoms. Their immune systems are strong enough. Rapamycin lowers immunity. Seems to me that would logically potentiate the possibility of sores. The antivirals (Valcyclovir, Acyclovir, Famciclovir) that have been prescribed for me all work similarly and when taken at first signs of a oral (mucosal or tongue) soreness are quite effective in eliminating the problem in just 24 to 36 hours. If you wait too long, a day or so, the sore has developed and the medications are less effective in clearing the soreness quickly but will prevent further sore development. Itā€™s better to get the meds in advance so they will be available for use at first signs. Acyclovir is a common and relatively safe medicine. Why not give that a try to see if it works. It is commonly prescribed by most doctors for mouth sores. It is also covered by insurance and inexpensive.

1 Like

Do you have any evidence of this kind of correlation between mouth sores and intestinal issues?

Why do you think itā€™s lower?
ā€œ Less than 15 percent of rapamycin is absorbed when taken by mouth.

This study showed that substances known a furanocoumarins, plentiful in some forms of grapefruit juice, can decrease the breakdown of rapamycin. This makes the drug reach higher levels in the bloodstream, two to four times the levels seen without a juice boost, and thus increases the amount of the drug that reaches its targets.ā€

https://www.uchicagomedicine.org/forefront/news/grapefruit-juice-boosts-drugs-anti-cancer-effects

Coeliac disease: oral ulcer prevalence, assessment of risk and association with gluten-free diet in children - PubMed (nih.gov)

1 Like
2 Likes

By observation, I have been suspecting the connection between canker sores, immune system and digestive system. When I take too much Rapamycin or do not follow longer breaks, my immune system apparently gets suppressed more than I can tolerate and this manifests in canker sores and possibly digestive tract issues. Therefore, I closely watch my dose and intervals in between.

3 Likes

Its interestingā€¦ I donā€™t know the correlation or causation here, but it is well known that higher dosing of rapamycin causes GI issues, diahhrea, etc. and many here have reported that effect too.

Iā€™ve also seen this mentioned in dogsā€¦ it seems to do something in the GI tract that can be problematic. I have no idea if this is immune system related or not. See this example below in dogs:

2 Likes

I also took breaks or delayed my next dose a little. It depends on the person but a lot of those that keep on decreasing and decreasing till they get NO side effects at all are likely decreasing too much. I would say one will just have to put up with some side effects that is again depending on the persons. Itā€™s not always true that decreasing dose is always safer than keeping same or increasing depending upon how much we are talking about for i guess we are all familiar with all the many many Uveitis articles where low dose made it worse and higher dose made improved it. Yea that was somewhat of a concotion or meaning contrived example but would think if for that then there are also others where the same may be true as far as dose dependancy - higher dose is better than lower.

1 Like

Is the leucine supposed to be in addition to Lysine ?

Do you have the reference for that quote? The dose is about 5-6 mg for a 25 kg dog. That is large but if dosed intermittently the vasculitis is a very disturbing finding.
Is this kaeberleins work??
More info please!!!

The quote Iā€™m referring to is:
In dogs dosing at all levels induced a vasculitis and at doses greater than 0.25 mg/kg this led to such severe manifestations that they were killed before the end of the 28 day study. At the higher doses the vasculitis affected the gastrointestinal tract, interestingly, it also caused a thrombocytopaenia. Marked depletion of cells in the lymphoid tissue, particularly B cells, occurred. In the dog, toxicity due to a vasculitis, that appears to have a particular predilection for the gastrointestinal tract, made it impossible to assess the immunosuppressive effects of the drug in this particular model. This species- specific reaction to rapamycin confirmed similar unpub-

See my post here: One Week Rapamycin High Dose Test for My Dog; Schedule and Results - #9 by RapAdmin