Anyone take it? I’ve read SO MANY success stories about it. My DO prescribed it for me but I haven’t taken any yet because I’d like to learn more. I’ve read it gives you your life back and completely stops the progression of the disease.
I’m taking it for almost a year now together with Alpha Lipoic Acid. So far I haven’t had any flare and my creatinine level has been consistently going down. Now close to normal level. My doctor said LDN is an immuno modulator.
Is this instead of plaquinil? And has anyone had a bad side effect or allergic reaction to this medication? I have not heard of this medicine before. Thank you for the info. Crystal and Piper.
I tried it for four months. The problem is I was having chronic muscle pain which I had been dealing with using Percocet. And you cannot take narcotics and LDN at the same time. So I sucked it up and dealt with the pain for four months but the LDN did not help with the pain, so I had to quit it so that I could go back on the Percocet. However I told a friend of mine about it. She has MS, and it has definitely helped her in a big way. You just can’t take LDN and narcotics. LDN was initially created to help people stay off of narcotics.
Hi, I've taken it and although I was feeling a bit better and was getting around easier, I stopped because I had issues sleeping, had very vivid dreams and had tremors (from lack of sleep). I only took it for about 4 months. I was not sure if I was physically feeling better because the Lupus had calmed down a bit or because of the LDN. I just could not handle not sleeping and feeling jittery and out of it from lack of sleep. I may give it another shot in the future (starting much slower this time) since I've just come off steroids and do not want to end up on them again.
I would certainly give it a shot Crystal. There are indeed a LOT of success stories. My only advice is to take it slow so your body adjusts, take it early morning and have something to help you sleep.
Good luck! :)
Hi Crystal,
I took it for a couple of years…it helped for sure. Gives a boost of lasting energy for the day. I only took a tiny amount, 1 mg if I remember correctly. It really messes with your sleep in the beginning. Been off of it for several months…just felt I was taking too many things and it was pretty easy to stop.
I’m still taking Plaquenil. 100 mg. My LDN is just 3 mg.
ptpsr said:
Is this instead of plaquinil? And has anyone had a bad side effect or allergic reaction to this medication? I have not heard of this medicine before. Thank you for the info. Crystal and Piper.
Thank you everyone. My dose is 4.5mg and I thought that might be a bit much but am hoping it’ll stop the progression of the disease.
Thanks for mentioning this Crystal! I am taking Plaquenil 200mg a day. It took several months for me to begin feeling better but I feel as if I have improved since taking it. I still have fatigue which is the worst symptom at this point - it varies from day to day. I have also been diagnosed with autonomic nervous system dysfunction recently which the neurologist says is probably due to an autoimmune cause - mestinon has helped tremendously with this. What you have posted about LDN sounds very interesting. Is the physician that prescribed to you younger? It sounds as if the LDN treatment is a newer practice? Does it give you more energy? I see online where LDN helps with fibromyalgia and other autoimmune disorders too. Thanks again for sharing this! I am going to look into this more.
The doctor that gave it to me said that if I knew what he knew about it, I’d run to the nearest pharmacy to get it.
I haven’t started taking it because I am not officially diagnosed yet. I see the rheumatologist this next week so I didn’t want to take anything that will interfere with a diagnosis. Initial blood work and symptoms point to lupus. I do plan on taking it after I see the rheumatologist.
It sure does sound like an amazing drug! It just might be hard to get, you have to shop around for a doctor that is familiar with it. It has to be made at a compounding pharmacy so you might possibly be able to see which doctors are prescribing it from the pharmacy? I thought I read something about doing that.
Crystal, I saw that website. It is very helpful. It mentions something about a topical form that is compounded. Does the doctor that prescribed it to you practice at an academic medical center or in a specialty practice? I’m very interested in this! Thanks again for sharing.
My experience was almost identical to that of Carla’s. I went off my Tramadol to start it and sucked up being in immense pain daily for 3 months but had no help from the drug whatsoever and am back on my pain meds noe. Only a handful of pharmacies compound the medicine so you just have to order through one of them. No side effects though for me. That part was good. I was so hopeful though, and no good came of it for me. I sure hope others have more assistance and relief.
The doctor that gave it to me wasn’t an MD, he’s a DO. I see him for thyroiditis because he’s helped me more than any endocrinologist I’ve seen.
And I’m on a prescription NSAID for pain (Voltaren) which you can take with the low dose naltrexone so it’s easier for me to take it than it is for those that are on different pain medicines.
Crystal, the claims about LDN are well ahead of the evidence at this time, which is problematic, as a lot of people are cashing in on these claims and the long-term results are unknown. See:
http://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cu...
If the claims are being made by someone who stands to profit from your purchasing LDN, they are not a reliable indicator of effectiveness.
In fibro groups you see this drug mentioned a lot. I think because it is used to help with pain specific for fibro.
Naltrexone is a antagonist to opioids....people use it who are trying to get off opioids generally ones who have addiction issues.
I really never seen it mentioned even in any SLE sites about this helping with lupus pain, though it i think it might help some who have RA along with SLE or some other tag along autoimmune disease that does cause pain.
I just think most doctors like to keep their patients on NSAIDs as it also helps inflammation so helps keep lupus in control.
I ask your doctor why they put you on this drug, out of curiosity instead of a NSAID.