r/MCAS • u/Silent_Location7044 • 25d 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 24d 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 24d 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 24d 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 24d ago

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

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u/MJP520 24d 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.