I take 3 mg rapamycin with grapefruit and some oil every 11th day. I suspect my enamel loss has nothing to do with rapamycin, but post this since some on this forum also take LDN:

Since my last dental checkup half a year ago, I have lost enamel resulting in more than 10 teeth needing fillings. I also broke a tooth vertically while chewing (and I have not yet been able to find any dentist in Europe that is willing to try to save the tooth using e.g intentional replantation, any dentist suggestion is welcome). I have bruxism and wear night guards. I took LDN 3 mg/day, but after reading on Reddit that some were suspecting LDN to cause loss of enamel, I stopped taking LDN.

3 Likes

enamel loss??? I have never heard of that… and I would be pretty worried should it happened to me.

1 Like

Yes, I am worried and try to find the cause. I have experienced waking up with very dry mouth at night the last week and I see some here have reported dry mouth as a side effect of rapamycin. But this is after the dentist told me >10 teeth need filling. I cannot remember having dry mouth earlier being on the same dose of rapamycin. I have decided to continue with rapamycin.

A reason for the enamel loss could be acid (combined with my bruxism and possibly too hard toothbrush and brushing too early after eating the acidic food). I picked and ate a lot of raspberries this summer and filled up the freezer eating raspberries daily.

I would recommend starting to use stannous flouride toothpaste (Oral B Pro Expert / Crest Pro) with an electric toothbrush.

See this:

2 Likes

Get some xylitol gums and have them after you have something to eat… it is supposed to prevent decay by stopping the bacteria.

3 Likes

Took my first dose of Rapacan yesterday morning, 1mg at around 8am, and developed a rash on my neck around 10pm. Burning sensation last night, and today’s it’s itchy.

Getting a haircut is the only other possible cause I can think of, but I’ve never developed a rash like this from going to the hairdresser before, so I’m fairly sure it’s the rapamycin.

Small price to pay for the benefits I’ve experienced with my asthma so far.

2 Likes

Yes - its probably the rapamycin (in combination with the haircut). Its surprising at a this low a dose. I would wash the pillow case before your next dose in case its got hair on it that causes irritation.

5 Likes

Good point, it may be the combination of haircut + rapa. Barber needs to clean his clippers when he has a immuno-suppressed rapa client under his knife :upside_down_face:

Given the location of the rash, I agree with @RapAdmin and I’d wash your pillowcases and sheets as there may be something such as dust mites along with the Rapamycin that triggers the rash.

3 Likes

For some, 1mg is a small dose. For others, it’s quite noticeable in terms of effects. I don’t want to minimize reactions at low doses.

Also, there’s the spin-the-effects-wheel of inconsistent results. One might not have the same result next time.

6 Likes

I am now taking 2mg with GFJ. Just had my bloodwork 2 hours ago… so will know the results in 2 days. I am expecting it to be above 3ng/mL after 50 hours.

I got the result today of 4.7ng/mL after 50 hours.
Should I drop my dose to 1mg?

@DrFraser drop to 1mg? Or is last week’s residual causing this week to bump up? I was expecting it to be about 3.7ng/mL

1 Like

That is too low a dose to even affect you.

That is a bit of a conundrum. 1 mg will be too little, and 2 mg too much. I’m surprised by that level being so high. So there are 0.5 mg tabs - I’d think 1.5 mg with GFJ and recheck. I’m still surprised by this level with just 2 mg.

2 Likes

I think I will stick to 2mg… so weird… or maybe reduce my GFJ or cut out the hemp oil … or maybe try it without my meal and see the results… next week I will do it without eating. That should drop the level … by how much I will be curious to find out.

1 Like

You can just bump your interval out to 9 days as another option.

3 Likes

I have been able to eliminate my itchy hives by alternating between 4 mg + GFJ + EVOO and 3 mg + GFJ + EVOO every other week. I guess this is as high as I can go without any side effects.

3 Likes

Me too. That is the exact dose that I have come to use. Otherwise I don’t get any symptoms, but my numbers go stinky bad and (even though it’s unproven that this is a bad thing) I get nervous about it and decide to reduce my dose rather than use MORE PHARMA.

3 Likes

I decided to try 6 mg + GFJ + EVOO today after taking a break last week. I am having a gut-wrenching stomachache. I think my body is telling me to stay at 5 mg + GFJ and below. I don’t think I want to go through this pain again. :stuck_out_tongue:

7 Likes

I am now wondering if it wouldn’t be more effective to aim for much smaller but more constant concentrations of rapamycin over time for purposes of controlling increasing mTOR activity associated with ageing while limiting off-target effects. I had to drop down to 2 mg/month to avoid dose limiting effects, for me aphthous ulcers and carbuncles, and had been tolerating that dose without problems. I attribute those side effects to mild immune disruption. I am now on 1 mg every two weeks and I am avoiding what are for me dose limiting effects. I wish I could experiment with 100 - 200 mcg/day.

Daily pterostilbene may be an alternative but the issue is lack of human studies on dose for adequate mTOR suppression.

1 Like

Have you tried 0.5mg to experiment with?

1 Like