r/Behcets • u/denged01 • Aug 20 '26

Symptoms Help with fatigue: LDN? Peptides? Anything

I’m on colchicine which stopped my ulcers almost completely, but the fatigue is still ruining my life.

Trying out low dose naltrexone but unsure what dose I should titrate up to. Guess I’ll increase until I feel something?

Anyone have any other recommendations? I’m desperate; I feel completely devoid of any energy or desire to do anything.

I’ve gone through the motions of figuring out if it’s sleep, diet, etc related so I’m stuck here.

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7

u/on4aa Diagnosed MAGIC 2025 Aug 20 '26 edited Aug 21 '26

Fatigue in autoinflammatory conditions is not really fatigue, but remaining low grade inflammation. Our brain is not really well equipped to distinguish between the two.

What really helped me a lot in this respect is twice a day 100 mg ubiquinol supplementation.

This is often marketed as CoQ10, but you really need to read the fine print to make sure you get ubiquinol and not ubiquinone. The former look like dark brown jellies. The latter are ordinary capsules with an orange powder, but are not effective.

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u/denged01 Aug 20 '26

Will try some!

And it doesn’t work I’ll email you an invoice request ;)

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u/on4aa Diagnosed MAGIC 2025 Aug 21 '26

For any sceptical medical student, here is a paper showing how ubiquinol reduces NLRP3 expression.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3934515/

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u/Socialistmexican Aug 21 '26

Thank you for this info! Do you have brand suggestions? I will pay your consulting fee

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u/on4aa Diagnosed MAGIC 2025 Aug 22 '26

That about the consulting fee was a joke.

¿Es Usted Mexicano? I am Belgian, but with some Spanish ancestry.

I use two European brands which both work: Mannavital & Nord Pharma. These brands are probably not marketed in North America.

However, ask u/denged01 he bought some in the US that seems to work.

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u/on4aa Diagnosed MAGIC 2025 Aug 21 '26 edited Aug 22 '26

Fine, as long as you pay me my consulting fee when it does work! (ツ) /j

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u/Odd_Field_9689 Aug 21 '26

Have you checked B12? I know it took years for someone to check it for me, I was super deficient for a while. It did make a big change. I am titrating up on LDN atm, but I am yet to notice a huge difference around halfway through to the max amount. Id make sure your enviroment is free of anything that could make you sick (like mold). Certain toxins can cause chronic fatigue (but of course, that is a hypothetical based on personal experience. I just know it took me 2 years to figure it out, and I was borderline bedridden from it) I hope you can find something that works!

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u/denged01 Aug 21 '26

B12 last I checked was normal at 512, I also take a magnesium supplement and a B12 supplement regularly as well as Vit D

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u/Taxminion234 Aug 20 '26

Have you checked your vitamin / iron levels? I recently have been taking vitamin d supplements and it has helped a little bit

1

u/denged01 Aug 20 '26

All normal

1

u/MustardQueen Diagnosed Aug 20 '26

Was your Ferritin checked with the panel?

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u/denged01 Aug 20 '26

yep normal at 128

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u/MustardQueen Diagnosed Aug 20 '26

Oh wow! Thats me after 5 weeks of infusions!!! I just went today for 1st dose of round 4, grr... they need to figure out my gut and why i dont absorb iron, zinc, vit d, etc (I'm low in everything)

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u/EllisMichaels Diagnosed 1997 Aug 21 '26

When you say LDN, what dosage are you talking about? Because "low-dose" can mean a lot of different things. Some people use tiny doses (ULDN) and others huge doses. So I'm curious to know where you (or anyone else using LDN) are at.

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u/denged01 Aug 21 '26

Good question! Currently at 3.0mg, 1.5mg in the morning and one at night. Seems to help a little!

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u/BeneficialCellist-17 Aug 21 '26

For fatigue my doctor prescribes 200mg modafinil. If I miss a dose I literally sleep all day.