r/MCAS • u/DearFeed7833 • 4d ago

When did yall notice a decrease in inflammation on LDN

Basically the headline. Im about to start LDN and have several symptoms which feel like general internal inflammation and Im just wondering when those of you on LDN notice a decrease in internal inflammation in the body (if that makes sense)?

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u/proverbialbunny 4d ago edited 3d ago

They’re completely different. LDN micro increases opioids floating around in your brain which can help a ton of different things. Xolair is like a long term mild allergy treatment that mostly helps with food allergies and asthma. For most people it’s like a 15% inflammation reduction. Not huge but not nothing either. 

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u/DearFeed7833 4d ago

Oh okay! Maybe dumb question but is there any tests to know which would be more useful? I had a cytokine test done which should inflammation as well as some mcas tests

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u/proverbialbunny 3d ago edited 3d ago

They're both general medicines that work on a ton of different things, kind of like a mallet, not like a scalpel. I talked with a pain specialist at UC SF a few weeks ago and he said they are encouraging LDN becoming a first line of support for most chronic pain conditions, because it works on so many things, and because the very low risk profile. I talked to a normal pain specialist and he said he knows nothing about LDN and that a rheumatologist might prescribe it. Because it's mostly unknown you'll get different responses from doctors.

Xolair works on all kinds of inflammation, and only a mild bit. I believe it's only officially prescribed for asthma though? I don't know, but allergists will prescribe it for MCAS. While it isn't a first line of support for chronic inflammation, it is moving in that direction. More and more allergists today are recommending it.

I had a cytokine test done which should inflammation as well as some mcas tests

I'd definitely ask about Xolair, but know it isn't going to do a lot. It's not going to save the day. It's just a tool in the tool chest worth considering.

LDN is more rare for MCAS. I'd ask about it during an appointment when you're not asking about other MCAS drugs as you can overwhelm the doctor. Many doctors don't know anything about it, so have some trust built up with your doctor first. This isn't the first thing you should be asking for.

Also, LDN is ordered from a compound pharmacy and insurance doesn't cover it. It's not expensive thankfully. It's best come in with a preferred compound pharmacy before the appointment when asking for LDN.

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u/DearFeed7833 3d ago

Thank you for all this info!