I’ve been taking 5mg Rapa for 4 years, and switched to 12mg/week 18 months ago.
My Crohn’s disease went into complete remission a year ago, and the colonoscopy showed extraordinary improvement. I assumed this was because of my meticulous diet, etc.
However, 2 months ago, I stopped taking Rapa for an operation, and 2 weeks into recovery (5 weeks after stopping Rapa, a massive flareup started. It was the worst flareup I’ve had in years. I’m now on a regimen of corticosteroids, which has given me some relief.
After watching Kaberlein’s recent interview:
I saw that Rapa potentially helps against cytokine storms. Does it make sense that suddenly ‘stopping’ Rapa would cause my Crohn’s to come back?
That’s what I first thought, and that is still a possibility. But it took a couple weeks after the surgery for the flareup to manifest. I’m not sure if that would be typical.
It’s possible, you say that you stopped taking Rapamycin 5 weeks ago, maybe you’re Mtor activated after you stopped taking Rapamycin causing you to have a flareup.
I took if for psoriatic arthritis and it worked for about six months, and then the effect dissipated over the next six months. Have you experienced a decline in efficacy? Could be you need a break and it wasn’t long enough.
I have been extremely curious how LDN would work along side rapamycin - I am optimistic that they will work well together. If you, or anybody else, ventures takes both for auto-immune (or any other) conditions, please share the experience!
I tried LDN about 5 years ago, with mixed results. But I’m willing to try LDN again. I would like to get it prepared by a compounding pharmacy, to make it easier work into my regimen.
@szalzala, I’m taking both for auto-immune + a post-infectious syndrome and will share results in 1-2 months when I have more data. I’ve taken LDN on and off for a few years with modest results. @hamtaro, I’ve experienced changes in medications triggering flares in auto-immune. It’s why tapering off dosages is recommended.
