Are these issues related to rapamycin

Hello there and thank you to all on the forum, I am finding it enormously helpful directing my self experimentation. I am 53 with a string family history of dementia I am trying to stave off. I've been taking rapa at 6mg per week augmented with grapefruit juice for 6 months. I've recently developed tendonitis in my right hip and now have shingles in the same area. Does anyone think either of these are related to the immune modulation. Would appreciated ideas or thoughts 

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  • yes, I think part of it could be,  I had similar healing issues the few years I took rapamycin.  I would quit periodically for at least a month may be 2-3 if any healing processes were not happening  for things like tendonitis.  I also got shingles, but at 50 cant really attribute that to rapamycin.

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  • Thank you, that’s what I feel. However I’m still suspicious of the shingles. I am very well, none of the usual risk factors like stress or another infection and I’ve had a severe attack.
    I don’t suppose I can know but I think I was over doing the immune suppression as I also take an antiTNF drug for spondilitis . I’m now wondering if I can only take one drug would I be better on anti.TNF or rapamycin for longevity. I think both helped my spondilitis so I have a choice. Any thoughts very gratefully received 

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  • Done with Rapamycin.  Same age - also had shingles several times. Just experienced another Rapamycin skin outbreak. Started with itching on the arms and worked its way onto the face into full blown facial edema. AND another upper resp infection.

    I know everyone responds differently.

    It blows my mind how these rapa cream protocols to reduce fine line and facial wrinkles actually work for some people. Favorable genetics I guess.

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  • Question: Have any of you who report shingles after taking rapamycin had the shingles vaccine?

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      • Dan Nave
      • Dan_Nave
      • 5 mths ago
      • Reported - view

      JGC A bit off topic, but...  I'm not taking Rapa, but several years ago I had an outbreak of shingles so later I decided to get the Shingrix vaccine.  I got the first shot, but the side effects were more extreme than with most vaccines so I wasn't going to get the second.  However, my doc persuaded me to get it, and I did.  

      Recently, I saw an article that suggested that shingles could be an activating trigger for other viruses leading to increased possibility of developing Alzheimer's disease.  Apparently, the shingles vaccine correlates with a reduction in incidence of dementia as well.

      Shingles infection may awaken dormant neurological herpes viruses, causing inflammation and accumulation of Alzheimer’s associated proteins in the brain.

      <https://scitechdaily.com/common-viruses-may-be-triggering-alzheimers-disease/?fbclid=IwAR3lDZth0DkhPuAgTWv6YRRivmXQ47Fv61vk-idojSHcqMZIrXYrX5XlX6w>

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      • Michael
      • Michael.1
      • 5 mths ago
      • Reported - view

      JGC I have not

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      • Karl
      • Karl.1
      • 5 mths ago
      • Reported - view

      Dan Nave a few things.  I too had a bad reaction to my first shingles vaccine.  The second wasn’t as bad as I medicated with Tylenol and Ibuprofen for 24 hrs after the shot.

      Shingles is a reactivated herpes virus. I have not heard of shingles or the vaccine activating other herpes infections.

      Lastly, the the Alzheimer’s connection is doubtful.  And worse the whole Alzheimer’s due to amyloid protein is in doubt as the “big” first study that showed that connection was fraudulent.

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      • Dan Nave
      • Dan_Nave
      • 5 mths ago
      • Reported - view

      Karl Either check out the link a few posts above or search the quotes provided there,  or see this link:

      https://content.iospress.com/articles/journal-of-alzheimers-disease/jad220287

      This seems to be new info, I can't vouch for it beyond what the article states.  It seems within the realm of possibility to me.

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      • Karl
      • Karl.1
      • 5 mths ago
      • 1
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      Dan Nave interesting, thanks.

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    • Karl The Alz / Plaque research is discussed in depth with researcher input here: https://www.rapamycin.news/t/rapamycin-increases-alzheimers-associated-plaques-in-mice-study-finds/1787

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      • Dr Sian Klerk
      • Doctor and self experimenter
      • Dr_Sian_McIver
      • 5 mths ago
      • 1
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      Dan Nave Thank you this is most helpful. I wish I'd had the shot before the shingles but at 53 its probably still worth getting. Not sure how long after shingles would be the most useful time but this article will certainly help me persuade my doctor to give it I think 

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  • No I hadn’t had the vaccine. Sounds like a good idea. I think I may have been over doing it and tipping into immunosuppression rather than modulation 

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  • It seems clear that it would be a very good idea to get vaccinated against singles before undertaking regular doses of Rapamycin due to its effect on the immune system.  I was part of the original human testing of the shingles vaccine, and I was informed after the test concluded that I had received the real vaccine (not the placebo).  Since then I have been re-vaccinated twice more against shingles.  My wife and I take 1 mg of Rapamycin (Sirolimus) every Sunday (without grapefruit juice), and we have not had any shingles symptoms.

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      • Michael
      • Michael.1
      • 5 mths ago
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      JGC Very interesting. 

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      • Fred Cloud
      • Fred_Cloud
      • 5 mths ago
      • Reported - view

      JGC Only 1mg a week? Why so low of a dose?
       

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  • Thank you. I think I’ll reduce my dose and get the vaccine 

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  • Shingles vaccine recommended for anyone over age 50.

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      • Michael_B
      • Hypochondriac
      • Michael_Berger
      • 3 mths ago
      • Reported - view

      Karl Just to proffer a different opinion.  Only on Age a short time, but I've realized many are interested in life extension, but not holistic -- despite many being LEF readers.

      Generally, IMO, all vaccines have substantial risks.  Yes, everything has risks, but whether shingles or other virus, my understanding is it never leaves the body, but is merely "controlled."  That is the function of the immune system, which has worked well for most of man's 400,000 year existence.

      That AD is implicated in some whom received Shingles vaccine is not a surprise.  Although  many in holistic community have considered Alzheimer's Type III diabetes, and mostly a product of the typical High sugar, high carb, low fat (brain is about 60% fat,) generally crap diet.

      My holistic MD for many years, says he was taught if you want to find a drug with few negative side effects, use a new drug.  Shingles vaccine for > 50 y.o rec'd FDA approval about 10 years ago.  Lawsuits have appeared just past few years, including possible blindness, etc.

      I'm not trying to present a full case, as there is much info available, just to state an opinion opposing shingles, or most / all vaccines.

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      • Karl
      • Karl.1
      • 3 mths ago
      • 1
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      Michael_B didn’t realize you were an anti-vaxxer. Impossible to argue/discuss a religious belief system.

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      • Michael_B
      • Hypochondriac
      • Michael_Berger
      • 3 mths ago
      • Reported - view

      Karl For the record, I'm a devout atheist!  My "pedigree" is via Ayn Rand.  Regardless, despite your incorrect assumptions, your argument (sic) is one of the worse, most evil, logical fallacies -- i.e., ad hominem,

      But you must be aware there are many medical / scientific questions about all vaccines, from childhood MMR vacs, to shingles, covid, etc.  And legitimate questions raised from autism, to other serious negative side effects, sometimes taking 20-30 years to impact our immune systems.

      And BTW, I had the first 3 covid vacs -- which technically is not a vaccine in traditional sense -- but will not do any more, as the latest vacs have little effect on the new variants.

      So others will not jump to your type of conclusions, I will add "Atheist" to my profile.

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      • Karl
      • Karl.1
      • 3 mths ago
      • Reported - view

      Michael_B my apologies. I did not assume you were religious, but strong belief systems surround vaccines these days.  My learned professional opinion is that vaccines are miracles of modern science. They have side effects which are rare and are strongly outweighed by the benefits.

      There have never been any proven connections between vaccines and autism. Covid is a vaccine. There have never been any vaccine side effects that started years later. You may not be an anti Vader but you share their thoughts.

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      • Michael_B
      • Hypochondriac
      • Michael_Berger
      • 3 mths ago
      • Reported - view

      Karl You continue to place me in a group, I specifically said I am not a member of -- whether a religious group, or an anti-vaccer.

      No point in our discussing more, but for those reading, there is fair amount of evidence connecting vaccines with autism, although IMO it was  at least partly due to the mercury added to almost all vaccines, until made illegal.

      Or do you also think that "modern dentistry" placing mercury in mouths, is also a "miracle of modern science?"  Even today, in some U.S. states, if a florescent bulb   (mercury) is broken, the hazmat team is supposed to be called in.  Apparently the only safe place for mercury is in deep, contained storage, or in children's mouths -- or via Thimerosal  in vaccines.

      But more impt, if you examine every vaccine, from Salk, etc., the respective disease declined well before the vaccine was in general use. 

      And re covid, try telling the millions of long-haulers of the benefits vs risks.  And that has also been linked to some AD.

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      • Karl
      • Karl.1
      • 3 mths ago
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      Michael_B well we agree that there’s no point discussing. I hope anyone reading your posts realizes you are putting out misinformation.

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      • Dan Nave
      • Dan_Nave
      • 3 mths ago
      • 1
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      Michael_B I believe you have misread the information about Shingles and Alzheimer's Disease.  It is not the people who had the vaccine who had more AD, but the people who had Shingles... 

      There was a reduction of AD and dementia in people vaccinated against Shingles.

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      • Michael_B
      • Hypochondriac
      • Michael_Berger
      • 3 mths ago
      • Reported - view

      Dan Nave Sorry, Dave, you are correct.  I almost forgot my posting,  but my point was re vaccines generally, AD, not merely the shingles vaccine.  And shingles seems clearly due to weak immune system, which is main reason the virus from childhood was contained, but after age 50-60, many have an immune system too weak to continue containing it. I have not investigated Shingrix, but just a few years may not be long enough to identify all the negatives.

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  • The only side effects I have noticed from Rapa are skin issues. - Acne and mouth sores.

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  • Thank you all. I don't have any side effects but my worry is that overly suppressing the immune system, even if at a subtle level, may increase the risk of cancer. Any thoughts? 

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      • Spasov
      • Spasov
      • 3 mths ago
      • 1
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      Dr Sian Klerk Up to now, rapamycin and rapalogs are the most well studied mTOR inhibitors and they are now clinically used as cancer treatments. However, the possibility that inhibition of mTORC1 with these drugs might lead to Akt upregulation and outgrowth of more aggressive lesions is a concern.

      Rapamycin and mTOR kinase inhibitors - PMC (nih.gov)

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      • Michael_B
      • Hypochondriac
      • Michael_Berger
      • 3 mths ago
      • Reported - view

      Dr Sian Klerk We "know" that cancers likely start 20 - 40 years earlier, so while good that only skin / canker response early with Rapa is a plus, but I always assume there is chance anything new may have "unknown" consequences.  In economics one talks of known knowns, & unknown knowns.

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      • Michael_B
      • Hypochondriac
      • Michael_Berger
      • 3 mths ago
      • 1
      • Reported - view

      Spasov I have not searched yet, but that article is from 2008, & far more learned since.  But removing senescent cells, SAPS, & clearing out junk, is likely to permit immune system better chance to counter / contain cancer, which it had been doing for decades.   Cancer is always present, but after age 50, & esp 60, immune system no longer can contain it.  Senolytics incl Rapa more likely to help, rather than hurt.

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