#660

Whilst your mcv is improving rdw will deteriorate. At a steady state rdw will improve.

#661

Not sure if I should post here or in its own thread but I thought I’d report on my first week of using rapamycin, I used 4mg (no grapefruit juice or anything) and only weigh 115lbs. In retrospect this was either too high a dose to start or rapamycin just may not be a good idea with my condition.

Background-> mid 20s male, suffering from chronic health issues since covid vaccination 2 years ago in april/2021. Please don’t press me on this, yes I’m certain. Within 48hrs I developed heart issues (PACs, very heavy heart beat (resolved) tachycardia (semi-resolved) as well as inflammation mainly in my sternum/chest that would spread to more areas over the course of the next two years. I also have rapid muscle twitching that is pretty random all over but I’m not super bothered by it. I still have PACs very regularly so going into this rapamycin dosing it was mostly that issue, joint and muscle pain/inflammation, (lots of crepitus in my joints currently, affects my upper spine, shoulders, ribs/sternum. Limbs are generally not affected) and lymph node pain that I was hoping to see positive changes in. Lymph node pain and burning muscle/joint pain exist but are kept mostly manageable with medication. These issues are every day and do not come and go. I do not understand the true nature of my condition to this day unfortunately.

For the beginning of my rapamycin trial I was not taking my usual medication (it helps but isn’t miraculous, just feel a good amount worse off of it but have had times where I couldn’t get it for a few days including recently so I know what it’s like)

First day of taking rapamycin I don’t recall having issues, however on the second day after I started having rather serious muscle pain, joint pain, lymph node pain in my left neck mainly and burning pain in the usually areas. Joints that aren’t even normally affected such as my elbows also were very achey and I didn’t want to move around much. I caved and went back on my normal medicine which helped a lot, but didn’t fully reverse the issues. Over the next few days back on my medicine my joints were still more achey than normal, and if I were to describe the pain it would be something like cold burning aching pain which doesn’t make a lot of sense I suppose… Additionally I experienced some shooting pains that I’m unsure are nerve or joint pains in my toe knuckles or hands and a couple other places. No digestive issues, or sleeping changes. Mouth sores, maybe very slight where it hit as I took the pills and slight reflux just for a day, and maybe slight inflammation along my esophagus as a result, nothing too bothersome there.

It’s been 6 days now and I’d say my joints are a bit worse off than when I started and have been more achey easily. I plan to wait a few more days before considering retrying from 1mg, at this point there is probably about 1mg still in my system and it’s tolerable but I am not sure it will be beneficial for me. Very unfortunate because I’m running out of good ideas for how to manage these symptoms, I am looking toward HBOT in the future when I have a better financial situation.

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#662

I am not sure if this could help, but I took my first dose (1mg) a month ago and since have taken two more dosed (2mg and 3mg) a week apart and I must say that my first dose produced most unpleasant symptoms that ranged from feeling fidgety, increased RHB, really tired and had joint and muscle pain, like getting a viral infection, even after 5 days I had really sore throat and a canker sore started to develop on the tip of my tongue. Since that dose I had almost none perceptible differences except I feel this mixture of tired and energized for two - three days post taking rapamycin. I also noticed that my joint pain and muscle pains that were borderline “fibromyalgic” are less perceptible (could be placebo, I must take rapamycin for longer to make any claims in this direction). I do have this random pains since I was a child and gotten a thick infection.
About post covid vaccination troubles, I can not say anything on the matter. I was vaccinated four times (mRna vaccine / twice Pfizer, twice Moderna) and had no issues. Contracted covid that was picked up by test, but had no symptoms what so ever. I believe LPCVS can be a nuisance or more and I hope you will find something that will help. I myself live with this “fibromyalgic” pain since childhood, I remember the exact day it all started, but managed to live normal life, didn’t make it an issue. Had all the tests done in my teens, everything came back normal or within normal values and probably acceptance that something is different and that you before that does not exist any more might be a part of your journey.

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#663

Thanks for the response, I’ll take that into consideration. I think overall I do have strong feelings of wanting to continue but yes I really will have to take it slow from here which is probably what I should have done from the beginning.

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#664

Here are my experiences from 4 mg Rapamycin + grapefruit Juice and a potentially contributing effect of apigenin.

The evening before 4 mg Rapamune, I had one half of a red grapefruit.
Two hours and 15 minutes before Rapamune I had the other half of the red grapefruit and 225 ml red grapefruit juice.
15 minutes before Rapamune I had a fatty breakfast. A two egg omelet, french fermented cheese and some oil.

After 4 mg I had three days of diarrhea and a bad upper stomach discomfort in stomach, jejunum, gallbladder and occasional refluxes (which is something I never have). I experienced an aching sensation when food was on its way through (what I perceive as) the lower esophageal sphincter and the food was about to enter the stomach. The diarrhea vanished after three days. But the discomfort continued for another 3 days.

First, I thought the massive reaction was only because of the grape juice. But then I stumbled upon the references to parsley and apigenin. It struck me that I also had taken 400 - 500 mg powdered apigenin in the evenings the week before Rapmune, the aim was to improve my sleep.

Note worthy is the fact that the week before, I had also taken amla powder to get nutraceutical support against rapamycin’s potentially unwanted influence on blood sugar metabolism. And I also had also had 1-2 teaspons of lions mane powder daily. So besides apigenin, there might be two other contributing factors.

This was the first time I tried to improve bioavailability.

My main theory is that apigenin might amplify the effect of grapefruit. And it would be really interesting to see a case study of apigenin and Rapmycin. If it improve absorption? Then it would be an alternative that is easily standardized and that have quite a bit of other health promoting effects.

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#665

For those who are interested, this is my exp with Rapamycin 2mg/week which led to (relatively) immediate side effects after approx 3 weeks of use, which included slight swelling/oedema on my left cheek. I had a forum post on this and based on pathology and Dr Green input, fairly certain Rapa is to blame.

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#666

How long did it take for the swelling to go away? I have the same problem and have stopped the Rapa for a month now, but swelling is still there.

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#667

Yes… it was a slow return to normal… about 2 months…but I was on a dose of 38 ng/mL for 7 months.

As I stated, I thought it was the minoxidil causing the edema… from something I read about dosing with minoxidil… that at 3 months…the edema resolved in the clinical trial patients… I did not think it was the rapamycin.

But I reduced the rapamycin to 12 ng/mL… and kept the minoxidil at the same dose 5mg per day.

Today my legs and ankles are skinny and muscles defined again.

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#668

Thanks for response.
I am going to stay off the Rapa for another month or till swelling goes away.

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#669

My ankles swelling lasted 48 hours after taking 5 mg of sirolimus with EVOO and grapefruit juice. It happened two times in a row. After I reduced the dose to 4 mg the edema did not appear any more.

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#670

Yes! As Blagosklonny says… up the rapamycin dose until you get side effects… edema… swollen ankles is a side effect.

Time to reduce the dose. I cut my dose to 1/3.
12 ng/mL… no more problems.

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#671

Do you have any pictures of the skin lesion? Facial edema?

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#672

Yes, will send ny private message.

#673

Left cheek? A small red bump?
Interesting that ankles swelling is not that common- just you and I.

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#674

Could it be that it affected your kidneys? Edema in ankles is the first sign that kidneys aren’t happy.

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#675

Well, my kidney score eGfr was 70 which is fine. Under 60 is abnormal. I do get a few random bumps on my dosing sometimes.

Only had swollen face, clogged eye glands and swollen ankles at higer doses 38 ng/mL and up. At current 12 ng/mL no issues. And at 6mg pills (no GFJ) for 1 1/2 years - no issues.

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#676

I have noticed an interesting side effect. I have been in a washout for the past two weeks as I had minor skin surgery and I didn’t want the Rapa to affect the healing. A few days ago, I accidentally bit my lip and a canker sore began to form (this happens whenever I bite my lip by mistake and happens every now and then).

What was different this time is that the canker sore never grew. In the past, they would always get 2-3x bigger than the initial injury and be painful and sore for several days. This time, the canker sore stayed small and then healed up much faster than in the past. So, it seems that my body is healing from canker sores MUCH faster than in the past when I am not on Rapa. Also, I had two pre-canker sores (little blisters) on the inside of my mouth this past week that never turned into canker sores. In the past, they always did.

It seems that Rapa is having a positive effect on my oral health in regard to canker sores. Anecdotally, many people who take Rapa appear to have canker sore problems earlier on but not so much as they continue taking Rapa. This may be due to positive changes in our bodies which allow us to deal with canker sores better and faster. Just my personal observations.

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#677

Today I had an unexpected result. I have been complaining that rapamycin has raised my lipids. Several doctors on Youtube and Twitter claim that a Lipoprotein (a) test is much more significant. I hope that they are right because I decided to get an LP-a test. The results came back today and I was pleasantly surprised. Unfortunately I have never had this test before so I have nothing to compare it with.

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#678

Mine always shows <15 and they don’t show the units anywhere. I’ve used like 3 or 4 different companies over the years.

Linus Pauling thought lp(a) should go up as vitamin C is less available (if you’re deficient). Probably a significant genetic component as well.

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#679

Lp(a) is genetically determined and stays the same. This is according to Dr. Peter Attia and all his work on ApoB, etc.

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