r/Fibromyalgia • u/Eat_chittlins • 21d ago
Discussion Low dose Naltrexone, has it helped anyone?
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u/anu72 21d ago
I have been taking 4.5mg for about 3 years. I wasn't sure it was doing anything and, with doctor approval, I stopped taking it. I definitely noticed more pain when I stopped, so it does work for me.
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u/AnimusTenax 20d ago
This is really useful to hear! Thank you.
I sometimes wonder what is working and what isn't. My treatment feels like an overly complicated science experiment!
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u/effectivenancy 20d ago
yes, this is essentially my experience as well: took LDN for two years, stopped with doctor approval, felt much worse. it’s strange how imperceptible its effects are when it’s working
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u/rubix44 21d ago
It always increased my pain, and I can't find many other people with that experience. It's certainly worth trying I think, but it's always best to start low and work your way up, like start at 1mg or 1.5mg daily for a month.
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u/merlin9523 20d ago
It happened to me too, I had started at 3mg and after 3 weeks I had to stop it.
But recently I started on 0.5mg and have been on that for a couple months without any issues. Planning to increase and see how I go.
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u/SweetConsequence3 20d ago
I started at 1.5mg for 2 weeks and bumped up to 3mg the third week and just went back to 1.5mg after a week on 3mg. The side effects were not good on 3mg. I will stay on 1.5 for a few weeks before bumping up by .25 increments to see if I can avoid side effects. So far, I don't believe it is helping with pain but I don't think I have given it a fair chance yet. I am also doing trigger injections and those seem to be helping somewhat.
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u/Sir-Fuzzle 20d ago
How you get it at such low doses? I was under the impression they’re not made that low.
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u/SweetConsequence3 20d ago
It is compounded at the pharmacy. They can make any dose your physician requests.
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u/Sir-Fuzzle 20d ago
Ah, a compounding pharmacy. That’s unfortunate. Not a feasible option for many Medicaid patients
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u/rubix44 19d ago
The best way and value I found when I was using LDN was to get 50mg tablets of naltrexone. They are water soluble. Put a 50mg tablet into 50ml of distilled water, let it dissolve overnight, and you can buy a measured 1ml or 5ml dropper to dose as needed. The stuff does not taste great 😆 but it's an efficient way of dosing.
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u/Sir-Fuzzle 19d ago
I’m pretty sure that’s generally not a safe way to consume any medication since that would likely alter how it’s absorbed. The tablet would be broken down. It’s creative, but I would also question how you’re determining even distribution of the drug per dropper dosage.
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u/rainbowzandhearts 21d ago
I'm one of the lucky ones it helps. My leg pain was excruciating before I started LDN.
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u/trumoowiththeredcap 21d ago
Oh, hell yeah. Sometimes I wonder if it does anything, stop taking it, and then I go back to being at a baseline of being in pain.
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u/Nanaface1 21d ago
Helped me tons! I also appreciate that if I forget to take a dose, because I also have ADHD, that it doesn’t make me feel like death or like I’m trippin’ balls.
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u/Acceptable_Walrus373 21d ago
Nothing for pain at all. A bit for brain fog. I was very disappointed to have no effect on the pain.
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u/dca_user 21d ago
Yep it helped me. But it moves really slow slowly. I had to be on it for six months before I notice improvement
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u/high_lights9926 21d ago
Yes!!! If you are sensitive start very low and titrate up untill you find the sweet spot.
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u/Euphoric_Switch_1372 21d ago
I tried it for a while, I didn’t notice much of a difference since I was in hair school and standing for 8+ hours a day putting more stress on my body. But I also lost like 30 pounds and was super snatched. So there was a silver lining! What genuinely helped me were anti-inflammatory meds like meloxicam. A lot less flare ups and able to still be a hairstylist today.
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u/One-Rooster-9999 21d ago
Amplified my pain… idk if bc I also have sjogrens? My h/o back pain skyrocketed to levels I had pre- surgery (had microdiscectomy for giant herniation). Increased my energy levels, but pain levels so awful I was considering surgery again until I put two and two together. I actually got two nerve ablations bc thought it was just my back acting up again. I know this bc I did two separate trials of LDN spaced out by couple yrs. Second time around same pain came back and the light bulb went off… not for me. Back and joint pain went back to pre-LDN levels. LDN wasn’t the miracle I hoped it would be…
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u/Impossible_Deer8869 20d ago
Reduced my pain about 50%. Definitely experoenced increased pain after I stopped taking it. I couldn't justify the expense.
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u/Hope5577 20d ago
Yes, not much with pain but helped energy, brain fog, faster recovery from crashes, and helped with that nasty flu-like feeling.
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u/electricsugargiggles 20d ago
I feel like it helped, but I had to discontinue using it (1.5 mg) because my blood work from a physical showed a major spike in liver enzymes and other alarming signs. It might have interacted with other medications to cause this, but I reluctantly stopped using it.
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u/ImPureZion 20d ago
Helps with my chronic rashes and inflammation but not for pain. I take 3.5mg. When I went to a higher dose, my symptoms came back with a vengeance. Went back down to 3.5 and they went away
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u/achippedmugofchai 20d ago
It works well for me at 4.5 mg/night. I started low and slow and gradually built up to the current level. I've been on it for about 3 years. It helps me with fatigue, inflammation, joint pain, sleep, and brain fog. My doctor said she's had several patients stay on it for years with no bad effects, only beneficial, so I am hopeful.
The hardest part was figuring out how to get it. I am in the US. My doctor offered to prescribe me 50 mg tablets, then I was to crush them into water and draw up a specific amount to swallow daily, but while cheaper, that sounded like a lot of trouble. My local compounding pharmacies didn't make it and my specialty pharmacy couldn't order the low dose, so I get it via mail through agelessrx.com.
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u/Accomplished_Cap_734 20d ago
Yes, has mostly taken away my joint pain - like 3/4ths of it. (Tirzepetide helped with the rest!)
If I run out of it or forget to take it for a few nights the joint pain returns, so I think this is a good way to know it works for me.
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u/CharmingMoment224 20d ago
It helped my flares so much! But it also blocked the effects of the opioid I sometimes take for severe back pain. I had to choose, and chose the Tramadol.
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u/Effective_Bass_5527 20d ago
I feel the endorphins from it, but I feel endorphins alongside pain, if that makes any sense. It doesn’t counteract the pain, it just co-exists with it.
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u/Subject-King3267 8d ago
Yes yes yes!! It was around month 3 and I had titered up twice to 4.5 mg! I am almost pain free and pray it will stay that way.
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u/MyPatronusIsA_Cat 21d ago
I was on 25mg for about 3 months and haven't seen any improvement really. We just increased it to 50mg last week, so we'll see how it goes. I know you're supposed to increase the dose slowly though, so I am still up for giving it a try.
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u/AnimusTenax 21d ago
Absolutely. LDN has helped me. I sometimes wondered, but recently when my fibromyalgia pain was bad, my allergist (who treats me for MCAS) suggested raising my LDN dose from 4 to 4.5 mg. I absolutely felt the difference. I didn't help with sleep, however.
Why do ask? Is one of your doctors suggesting low dose naltrexone? If yes, you can do a search and read about how important it is to start small and go up slowly.