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?
Could be. Or the stress of the surgery? Or both?
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.
Yeah, I was thinking something similar.
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.
Low-dose naltrexone (LDN) has some good data for autoimmune conditions, including CD (Low-Dose Naltrexone Therapy Improves Active Crohn's Disease : Official journal of the American College of Gastroenterology | ACG). I have seen many patients respond well to LDN (with about a 50-60% response rate).
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.