Hello friends. Hoping you all can help me sort out the pros and cons of dose adjustments. I have mecfs, inappropriate sinus tachycardia, pots, fibromyalgia and the like. Current dose is 1 mg twice weekly based on autoimmune protocols.
I did well on rapamycin for a few weeks but struggled to recover following a virus. I caught this virus a few days after adjusting my dose from 1 to 2mg. I was a total vegetable for 4 weeks - did NOT respond to rapamycin post virus - but finally rebounded after adding high dose thiamine.
My energy and mood sink significantly as i near the time for a new dose. I’m debating whether it makes more sense to increase the dose to 2mg / 2* week (doc suggestion) OR try 1 mg / 3 * week.
My doctor recommended this twice weekly dosing because this approach is being tested to treat autoimmune conditions. So far rapamycin has helped me but I had startup side effects that are not common, and I’m afraid my poor health makes me an outlier among those on rapamycin. It’s hard to find information about how rapamycin may impact those with serious chronic conditions differently than healthier people.
I haven’t. My doc suggested the lower dose twice a week is being studied for autoimmune conditions. I had a very hard start up reaction even to 1 mg so at this point I would be nervous to try a higher weekly dose. It feels like the benefits I get from 1mg wear off before my next dose - this is why I wonder about trying it 3 * a week … but maybe there is potential benefit in a higher dose once a week. My condition at the moment is quite precarious so I’m erring on the side of caution with a low/slow approach.
My thoughts for what that’s worth:
Many people here can talk to you about side effects if you want.
Might be worth starting at very small doses every couple weeks and move up from there.
Most people here are experienced with Rapa for life extension, not for immune system mediation, so you might be better off talking to an Oncologist, or Rheumatologist.
