Seeking advice, afraid I have to quit

I posted a little of this in the ‘side effects 2’ thread but figured a headliner was the right place.emphasized text

I started Rapamycin and Metformin roughly the same time. Friday night Metformin 250mg, up to 500mg nightly thereafter. Rapamycin 2Mg following Monday. I did weekly with Rapamycin 2nd dose 3mg with grapefruit juice and 3rd dose a half grapefruit before 3mg. I felt some extra energy. I had aches and pains go away. After 1st dose of Rapamycin I had some numbness, neuropathy but not bad. Don’t know if it was the Rapa or Metformin. About a week ago I had pain in my leg that felt like gout. Then my leg swelled up. Then I had edema all over my body. Some shortness of breath and a racing heart. I had some urinary stuff too. Urge to go more often and a little incontinence. I was scared and almost went to the ER. I stopped everything after that obviously. I went to my Dr today and had blood work and an EKG. No issues really found. I was considered it might be a kidney issue. Meaning they weren’t processing and things were backing up to a toxic level. One other data point is I have had similar episodes before, (not on these drugs) where I had a bought of edema and neuropathy. Not as bad as this time however. I had Lyme disease pretty severely at one point back in 2010 and ‘stuff’ has been weird since.

So…… I was so excited to participate in this experiment. I do want to live a long healthy life. Do I walk away? Should I try a low low dose of Rapa separately and see if any symptoms return? What would you do?

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What did your Doc say?

Based on the fact that you had before without these supplements/drugs seems like you might try again.

I would do 1 drug/supplement for at least 3 times. My Choice would be Rapa…3 mg. No GFJ or other enhancer as that is dicy as you really do not know accurately how much boost you get. If that OK might raise to 6 MG…still no GFJ and after another 3 weeks start on Metaformin. Forget NMN. Use natural source for spermidine (Natto).

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At your age, I wouldn’t worry too much about taking Rapamycin. There are many other supplements that I take that are often overlooked as life extenders. Since you are athletic you probably already take creatine. Other things I have taken long before Rapamycin became a thing; are melatonin, lithium orotate, NAD+ precursors, niacin, tryptophan, omega 3s, etc. There are many others. You have time to wait until something that is even better than Rapamycin comes along. So, my personal advice to you would be just chill and enjoy life today.

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Yeah…desertshores probably has it right. Just wait till it gets a bit more sorted out with Rapa. My only add would be that so of the other stuff has issues that may affect you as well as Rapa so might just loosen up on all for a while a stay with diet , intermittent fast and exercise. Try Natto.

I mean if you have started having issues when taking the both, then you could either experiment to see which one is causing the symptoms(if either of them are) by just taking rapa or metformin for a couple weeks and see if the same symptoms come back with either. If they impact you I would just say , I think the dangers/ inconveniences of the issues you are having far outweigh any benefit either of the drugs are going to give you. Just stick to healthy lifestyle practices(exercising, eating healthy, good social life, regular doctor check ups, etc) and you will be fine, maybe check out other antiaging drugs but in all honestly there is no guarantee these drugs are going to work for any of us in increasing lifespan. If they do end up increasing lifespan, I have a feeling the impacts are not going to be super significant in people who already practice healthy lifestyles. At the end of the day you could live longer but would you really want you if you are constantly getting these symptoms which in turn may make life less enjoyable? I think we get confused with the idea of living longer, instead of living well. Hope things work out for you, keep us updated!

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Sorry to hear about your health issues. I don’t know what could have gone wrong but in my case I had to stop metformin because I was retaining fluid in my ankles. Two weeks after I stopped metformin the ankle swelling went completely away.

Really appreciate the words. Answers to above questions: 1/ Dr was very familiar with Metformin in their practice. Had a hard time believing it was the Metformin and not the Rapamycin. If you pull the side effects for either medication in their system they are similar. Both can cause Edema. They were never thrilled with me trying either of these like most traditional break/fix Drs aren’t and suggested again I refrain. 2/ Both my parents were gone when I was 45. Cancer and Stroke. I don’t want to do that to my kids so trying to do everything I can to last and potentially disrupt my preordained short life. So perhaps I am more bold. I will no doubt continue to do the other health things I do. Just feel like I should do more.

Interesting… Like Covid 19 vaccine there seems to be a myriad of adverse side effects that go unreported. I have been on and off again with metformin depending on which way the wind is blowing that month. (LOL). I have noticed some slight ankle swelling since I have been taking Rapamycin. It doesn’t bother me so I have ignored it. I think I will stop taking metformin again for a while and see if the swelling goes away,

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I would suggest a 4 week wash out period and then reintroduce Rapamycin at 3mg/wk without grapefruit. Providing no side effects increase by 1mg/wk up to 0.1mg/kg.

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Okay. 25 days later I am back. It was a winding road. I had a slew of blood work and all was normal. The edema and gout like pain in my leg persisted. Having success with TCM (traditional Chinese medicine) in the past I went to get some acupuncture. The specialist said I had a blood issue/spleen that Metformin bottomed out. They treated me and put me on some supplements. All systems back to ‘normal’. I took 2 mg of Rapamycin this morning with water and a vegan omega supplement (don’t do sardines). As of now no side effects whereas last time I had weird neuropathy/numbness. Went for a run on the treadmill this morning and in the sauna as I write this. Will check in on this periodically.

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Thanks for the update. Its great to hear things seem to be going better for you. Please keep us informed as you continue on your trial. Health and health issues can be so complex, and we are all trying to figure it out…

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Quick update. Did my second dose on Monday. 1/2 a grapefruit an hour before, 3 x 1mg. Again no symptoms. I have to admit I am very curious what taking Metformin alone would be like. Add to that I wonder what the combining does. The last time with Metformin and Rapa together I felt a burst of energy from Rapamycin and had a hard time sleeping. Alone I feel a very slight stimulus but not a lot and sleep comes easily and I need my coffee in the morning. Equally I felt more reduction in aches and pains taking them together and generally better (until the edema and neuropathy set in week 3). The joys of being a lab rat :wink:

I plan to stay on Rapa only until I get to 6mg and see how that goes for a while. If I don’t get some of the previous benefits on Rapa alone I may try playing with Metformin at low dose and schedule.

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3rd dose this morning after my reboot. Qty 4 x 1mg with a vegan fat supplement. No sides. I can see why @Maveric78 found my first experience to sound like hyperbole. Rapamycin alone, at least for me, is anticlimactic. I don’t feel very different. Paired with Metformin I felt way better (at least initially). I am curious if I am alone in this assessment?

Yes, @Joseph’s thread is more typical I think.

I’ve been on Rapamycin over 4 months now and at 8mg/week for 3 of those. The only two effects I’ve noticed are weight loss (4kg) and the near removal of a large mole.

Interestingly I have two conditions, toe nail fungus and golfer’s elbow, that I hoped would improve… but have showed no change.

I’m interested to hear time course experiences from longer term users. @RapAdmin I recall you mentioned some benefits only kicking in after 6 months?

Why? At 47 and in good health what would expect to see? Rapamycin is a long-term anti-aging supplement. As you are in good health I wouldn’t expect to see much change. Be in it for the long run. I am 81 and in good health and I haven’t seen too many positive effects except for the extraordinary decrease in my actinic keratoses.
In short, this is a life extension supplement stay for the long haul.

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@desertshores good and fair question. Healthy yes according to bio markers and classic measurement, blood pressure, pulse, EKG etc etc. I feel I have a low level inflammation thing going on. Fatigue, aches pains arthritis, mental sharpness not what it was. I have read here that one of the positive side effects to Rapa was old man ‘aches and pains’. Was hoping how I feel was going to be impacted, positively. I am okay totally if Rapa is a wait and see and prevent catastrophic failure or delay it. For a period taking Metformin AND Rapa I felt better. Traditional western medicine isn’t and hasn’t been super helpful to me. So…. Net net. I am chasing a longer life and also feeling better. Even at 47!!!

Continue your journey, exercise, and continue to explore supplements that may be beneficial.
As for your “Fatigue, aches pains arthritis, mental sharpness not what it was”:

Please use Google Scholar and Google: “exercise reduces inflammation”, “exercise reduces fatigue”, “exercise improves mental sharpness”

To many people, this seems oxymoronic. " Ya, Chuck, sure going to the gym and lifting weights and doing resistance training is going to help my aching bones."

Now I am going to suggest a solution for you if you can’t or don’t want to go to the gym or just don’t feel up to exercising at this point. Find, or get a sauna or steam room and use it regularly.
*“Sauna use as a lifestyle practice to extend healthspan” It has many of the benefits of exercise.

I can only tell you that as an almost total placebo effect non-responder I have taken over the last 60 yrs or so almost every supplement the health food store has to offer and I never once had an “Oh! Where has this been all of my life!” moment upon taking a new supplement.

What I can tell you is that I have faithfully taken many of the recommended supplements such as Omega3 fish oil etc. and was active in playing tennis, jogging, and going to the gym when it was possible. For me, no supplement was as good for me as jogging and/or going to the gym. All of my health/lifespan markers were better when I was jogging or going to the gym. When I couldn’t go to the gym they all suffered regardless of the supplements I was taking.

I am 81 now and sadly virtually all of my friends and relatives of my generation have died. I used to proselytize to deaf ears about the benefits of going to the gym or taking supplements to my friends and relatives. I even offered and still offer my friends and relatives a free ride and pick up from the gym. As I said unfortunately they are mostly dead of preventable age-related diseases.
Why do I, and hopefully you, want to extend your health span/lifespan? To be able to take care of others that may depend upon us and not be a burden on others that might have to take care of us.

Sorry to be preachy, but one of my goals is to help others see the “light”

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@desertshires. I agree with you 100%. I am actually not helpless :slight_smile: and been googling like mad and reading books, science papers, seeing functional medicine drs, dry needlers, massage, acupuncture, the list goes on and on. Like you I have tried basically every supplement and take many now that I seem to get something from. I have a sauna that I bought at the start of the pandemic. I love it and use it 3-4 times a week followed by an ice cold shower. I do Wim Hoff Breathing (Google it :wink: ). I meditate. I have a gratitude journal. You name it. If it is ‘good for you’ I have tried it or do it. And exercise!!! Every day. Intensely. Weights. Cardio. Jump rope. Running. Bicycling. Tennis. I try to workout 3 times a day for 20-30 mins a time. I call them exercise snacks. If anything I need to rest more not more exercise. So these things I do have made a dent in how I feel but I still have a good ways to go. I am gonna keep trying stuff until I get it right and feel how I know I can. You were preaching. But it’s okay. You were preaching to Noah about the flood :wink:

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Right, you are doing more than I ever did. Maybe slow down and enjoy life a little more. New, members of my gym often get burnt out from over-exercising to the point that they don’t like going to the gym and quit going. I have whittled down my supplements to a precious few. I’m not sure I need any supplements except for life extenders like rapamycin as long as I am eating healthy and going to the gym. I have dropped some supplements because they might be having an effect on my biomarkers.
“Nothing in excess,” was inscribed in the Temple of Apollo at Delphi.
Still good advice today.
I wish you the best in your quest and hope you find solutions to your problems.

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Did you buy your own sauna? IR or steam? Looks like quite an investment and I hate being hot and sweaty, but the evidence for health benefits certainly seems to be accumulating.