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Old 12-06-2016, 03:39 PM #1
mskari85 mskari85 is offline
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Default LDN for autoimmune neuropathy

Hi all -

I have been prescribed LDN for my autoimmunity (RA and something else mysterious causing my neuropathy) and I have to say, I feel like it is making my neuropathy worse? I've been on it for almost 3 months and it might be helping my RA, but I ran out of it for a week where I didn't take it and I realize that my neuropathy was better during that week. Is this really a possibility with LDN? Could it really make something worse? I felt like there was no harm in trying it, but maybe I should stop taking it again and see what happens? Thoughts? Any experience with LDN here?
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Old 12-06-2016, 06:25 PM #2
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This paper provides evidence that LDN can help with chronic pain though there is nothing specific about neuropathy apart from a couple of animal model studies The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain.
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Old 12-07-2016, 02:51 AM #3
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Originally Posted by kiwi33 View Post
This paper provides evidence that LDN can help with chronic pain though there is nothing specific about neuropathy apart from a couple of animal model studies The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain.
Very, very interesting. My rheumatologist scoffed at me when I told her my primary prescribed it. She said it was only successful for people who have fibro.
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Old 12-07-2016, 10:17 PM #4
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I experimented with LDN and felt it made my feet feel more numb. My neuropathy is thought to be immune related too.
I don't have pain, or fibro. I even stopped for three weeks and restarted just to be sure it wasn't in my head, but the numbness got worse again.
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Old 12-07-2016, 10:45 PM #5
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Originally Posted by northerngal View Post
I experimented with LDN and felt it made my feet feel more numb. My neuropathy is thought to be immune related too.
I don't have pain, or fibro. I even stopped for three weeks and restarted just to be sure it wasn't in my head, but the numbness got worse again.
Wow. Interesting. I really feel like this isn't all in my head, either. And actually, when I went from 1.5mg to 3mg, my legs started burning and tingling and have been ever since. I thought maybe it was just the neuropathy doing its "thing" and it was unrelated, but everything got better when I wasn't taking it. I've stopped again and we'll see. Kind of a bummer because I spent 85 dollars on a 3 month supply. Oh well.
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Old 12-10-2016, 08:32 PM #6
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Default Ldn

I took 4.5 LDN for close to a month..since all my symptoms started in early October and the symptoms have been changing it's hard for me to say if it was going to work. Also, I have been prescribed so many medications since this started I think I got overwhelmed. So I stopped everything today and I am only going to take gabapentin and nortriptyline fir now. I just saw a neurologist who prescribed melexicane which is supposed to help with pain so I will give it try. I may also revisit the LDN at some point.

Also, if you use Facebook there is a group called Got Endorphins. Everyone in the group uses LDN for a variety of conditions. Its a nice group of supportive people. You may want to join the group and ask them,
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Old 12-10-2016, 10:01 PM #7
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Quote:
Originally Posted by Sophie0513 View Post
I took 4.5 LDN for close to a month..since all my symptoms started in early October and the symptoms have been changing it's hard for me to say if it was going to work. Also, I have been prescribed so many medications since this started I think I got overwhelmed. So I stopped everything today and I am only going to take gabapentin and nortriptyline fir now.
I think that LDN needs longer than a month to work, at least that is what I was told by the clinician who prescribed mine.

I take gabapentin (2400mg), nortriptyline (25mg) and LDN (3mg) without any issues.
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Old 12-13-2016, 08:46 AM #8
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Quote:
Originally Posted by madisongrrl View Post
I think that LDN needs longer than a month to work, at least that is what I was told by the clinician who prescribed mine.

I take gabapentin (2400mg), nortriptyline (25mg) and LDN (3mg) without any issues.
Decided to continue with the LDN. You are right, one month is not long enough!!!!
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Old 12-15-2016, 01:08 PM #9
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Originally Posted by Sophie0513 View Post
Decided to continue with the LDN. You are right, one month is not long enough!!!!
Good deal. I'd give it 3-6 months, as long as it isn't causing any side effects. One of the major complaints that I've heard people say is that they can't sleep well on it. The work around for that is to try taking it in the morning instead of the night.
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