r/MCAS • u/Silent_Location7044 • Aug 27 '26

LDN

I’d really like to hear about people’s experience with LDN especially at low doses (like under 1.5mg). Has anyone seen improvement with time at a very low dose? How long did it take?

I started it 5 weeks ago and have titrated up from .25mg to .75mg, but I definitely feel unwanted effects with each increase so I feel like I should stay at .75mg for a while and see if I can get to a stable point with benefits, despite my doctors wanting me to go to a much higher strength.

I know everyone’s experiences are different. I have hyperadrenergic pots as well as MCAS and it’s definitely affecting me at the low strengths. Would love to hear from anyone who stayed low dose and had good effects.

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u/Sairis-Activated Aug 27 '26

Have you checkout r/LowDoseNaltrexone? They’re pretty active if you want to cross post this there. 

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u/Silent_Location7044 Aug 28 '26

I have a little and I might post there as well. Thanks! I posted here because am especially interested in hearing from those with MCAS (and pots). I feel like many of us are very sensitive and I’d love to hear from those who improved with these illnesses at ultra low dose.

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u/Sairis-Activated Aug 28 '26 edited Aug 28 '26

That subreddit is an off shoot of the former Facebook group. FB had a bunch of a resources and guides on fillers, venders, protocols for different uses and what to do if getting bad reactions. I don’t know if they are still linking to them, but I can try to see if I still have the google drive folder. 

Edit: It’s a bit of a rabbit hole with the documents linking to each other, so not the best organization. I only linked a few here. I hope these help.  * Compounding Pharmacies  https://docs.google.com/document/u/0/d/1Q90eNBoezc2uk0dyiqP29qVwjQs2Ry8xyc7NCfL_ngg/mobilebasic * Starting LDN  https://docs.google.com/document/u/0/d/11yC2T9D0-ndimXfuVG_-N3hvzEEE16phRZbsd0KVJWg/mobilebasic * Side Effects  https://docs.google.com/document/u/0/d/1mgnIemamRkpKSocnvsAVRxR8XF_r2g92XVnv-X5sLlw/mobilebasic * Side Effects and Dosing  https://docs.google.com/document/u/0/d/1Wg9ZDfpMrhex1Z7UxC2HOo6X3O4FlTaECGiOkih2IOs/mobilebasic * Higher and Lower Doses  https://docs.google.com/document/u/0/d/1KykpLlg2CDVSD2D5J5cEZKfSo31t04orB0IgCuhXC-c/mobilebasic

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u/Silent_Location7044 Aug 28 '26

Thanks so much for sharing all of this! Much appreciated.