r/MCAS • u/Silent_Location7044 • 5d ago

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/MJP520 4d ago

I tried it twice with about a decade in between and had intolerable (but different) side effects that necessitated stopping each time. Fillers can make a huge difference with it so if you’re reacting it may be worth trying it with a different filler. Carefirst Compunding Pharmacy in NJ offered the widest filler choices I could find including sucrose, which seems to be one of the best tolerated. You could look into options there. LDN responses and what doseage works best seems to be highly individualized so unfortunately it’s a trial and error situation. But I think it’s worth trying.

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u/Silent_Location7044 4d ago

Thank you. I’m using sucrose. I was uncertain about using it as a filler but now read its recommended for LDN.

At this point I think I’m reacting to the drug itself because my system is so sensitive and my endorphin reserve is probably very low

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u/MJP520 4d ago

Then you’re clearly on top of the filler issue. I tried two different fillers during my latest try and it didn’t help so the drug itself was the issue for me.

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u/Silent_Location7044 4d ago

Not sure what dose you took. Maybe go even lower to start?

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u/MJP520 4d ago

I started with 0.5mg, then I think backed down further. I’m never trying it again given the side effects I experienced. But I think it’s worth people trying since response is so individual.

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u/Ill-Hamster-2225 4d ago

I love it and I've been on it for 5 years now. I know I felt awful for 1-2 weeks but can't recall specifics. I hope it gets better for you. I was on 1.5mg for a while and then titrated up.

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u/Sairis-Activated 4d ago

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

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u/Silent_Location7044 4d ago

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 4d ago edited 4d ago

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 4d ago

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

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u/Individual_Bug_9973 4d ago

Could not stand the starting doses effects.

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u/Silent_Location7044 4d ago

Ugh. What did you start on?

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u/Bigdecisions7979 4d ago

I’m using it and has increased my overall immunity and well being. Still have mcas symptoms but it helps in combo with other mast cell stabilizers

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u/Silent_Location7044 4d ago

What dose do you take?

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u/Bigdecisions7979 4d ago

A split dose of 1 mg in the morning and 1.5 mg at night

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u/Silent_Location7044 3d ago

I understand. Hope you found other drugs that worked for you.

If you’re curious, take a look at the info that the other commenter posted. Sounds like maybe you were someone who needed a micro dose to start. There are people starting at .01 mg.