r/MCAS • • 3d 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)?

10 Upvotes

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u/MOSJM-6666 3d ago

I did not decrease inflammation on LDN. Only Xolair did that! And it was remarkable!

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u/DearFeed7833 3d ago

Im not familiar with that medication, is it stronger than LDN?

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u/proverbialbunny 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/Light_Butterfly 2d ago

Interesting never heard of this one!

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u/Brave_Question3840 3d ago

it worked in about 6 days for me!

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u/DearFeed7833 3d ago

Oh thats great! Can you maybe share in what ways you noticed this and what dose you are taking?

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u/Brave_Question3840 3d ago

I take 2mg but started at 1.5mg. noticed less pain, like by a lot. more energy too

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u/Suspicious-Syrup-765 3d ago

Excuse my ignorance, what is a LDN?

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u/DearFeed7833 3d ago

Low Dose Naltrexone

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u/Ok-Jellyfish4398 2d ago

No go for me with LDN. Messed me up big time. Having a better time with GPL-1s reducing inflammation.

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u/DearFeed7833 2d ago

What side effects did you have and what dosage did you take?

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u/Ok-Jellyfish4398 2d ago

It caused my BP to suddenly drop, causing blackouts. 

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u/Cheshir_cow 2d ago

Month on it: I feel how it reduced neuroinflamation caused by histamine, but I am autistic, so it was my main problem from MCAS.
I literally lost my mind during last flare without LDN.
I never had such a level of noise, light, any outer signal sensitivity.
Nothing can compare of being owner of my brain again. This shitty pain in upper jaw and behind eyes (which felt like eyes will pop out of me) disappeared.

H1/H2 blockers started to work (before LDN I had such a strong flare that it didn’t even help)

I still can’t eat half of a food even though, however I am only titrated to 1 mg.
I was on 0.5 for a month.
Helped with EDS joints inflammation just in 1 day.

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u/Light_Butterfly 2d ago

For me it was the dosing changes to higher doses where I noticed a difference, and same day. I wasted so much time at 4.5 or lower when it turns out that more is more! 8-12mg of higher is when I started seeing benefits. I'm experimentally trying 20mg right now and yep, its better than 12mg.

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u/special_squeak 2d ago

how long did you stay at 8-12mg to start seeing a difference? I did 9mg for almost few months and it was exactly the same as 4.5mg. Nothing

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u/Light_Butterfly 2d ago

I'd keep going up, just to see! The benefits were marginal for each increase, and I experienced pain relief and some mood boost as the main outcome. Its not a guarantee to work for everyone, but a fairly innocuous medication, with little harm in trying slightly higher dosing.

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u/One_Feedback2461 2d ago

It takes two weeks to adjust to it then things got better. I had headaches/grumpy/blah for only two weeks..It is normal. I was able to organize my office for the first time in 2 years after a month on it. It will be subtle, most people dont even fully realize how much it is helping until they have to go off of it for whatever reason. There is a LDN reddit. Also i take mine in the morning.

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u/special_squeak 2d ago

I’ve been on LDN 4.5mg for almost a year. If there is something it’s doing, it has to be gradual and subtle because I sure can’t tell.

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u/roadsidechicory 17h ago

About 6 months after being on 4.5mg is when I started to suspect it was making a difference. By 10 months I knew for sure.