She takes it first thing in the morning then usually has breakfast but there is no protocol. She initially (first two weeks) felt an energy dip on the skip days which is the opposite of your experience. After the first two weeks she has had a steadier energy level. I have had no noticeable changes of any kind on a weekly dose. Good luck to us all!
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Update:
My wife underwent a stressful 4 day weekend out of state at a family function out west that we knew would mightily test her new rapamycin self-treatment. We were crossing our fingers that she would be somehow able to tolerate a full basket of her best-known lupus flare triggers and emerge unscathed.
Well, she was not quite unscathed but we are celebrating.
About 36 hours after her return she developed an all-too-familiar nasal lesion, a lesion which has for years been a reliable harbinger of her worst flares. Once her nasal lesions appear, they stay open and persist for weeks throughout the course of her flares.
Sure enough, she soon felt too weak to stay on her feet and almost immediately other symptoms started up: headache, low grade fever, rings becoming tight, and possibly the beginning of a nose rash. We were deflated at first and braced ourselves, but for the first time the symptoms did not progress! Her nasal lesion scabbed over within 6 hours (instead of 6 weeks) and all symptoms faded away by Monday evening, even the swollen finger joints. All told, her flare appeared, resolved, and she was back on her feet after less than 8 hours. This is completely unprecedented in our experience. She has been 100% fine since.
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Amazing results - thank you for sharing! I hope it continues on this positive trajectory!
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Update: My wife has had zero lupus flares since my last post. It has been months since even naps were necessary to maintain her stamina. She has been active and feels healthy. We experimented with her dosing schedule and have changed it from 1mg rapamycin daily to 3 mg every third day. Her inflammatory markers are now in normal range. She has experienced no rashes. Her heart rate no longer suddenly bursts to 140/min at rest. Her eGFR stabilized after starting rapamycin—-just in time since she had steadily declined to a low barely normal level. She has added NAC to her med routine as well as a probiotic containing Akkermansia and Christensenella to address her leaky gut. No adverse reaction from rapa for either of us. She continues to go to the gym with me and has restarted her social life. Bottom line is that this woman who was expected to pass away soon has regained her health overnight (literally). I easily found a number of reputable studies online which examined rapamycin’s effect on lupus just by searching “lupus and rapamycin”. They are extremely promising. My wife is over the moon happy and is ready to buy a crop duster and begin aerial spraying of rapamycin at once.
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RapaW
#25
Very happy for your wife, thanks for sharing this N=1 story!
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