Are these LDN side effects?

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis
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SpottyPoo
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Are these LDN side effects?

Post by SpottyPoo »

I started 1.75 mg 13 days ago. I've had no insomnia or vivid dreams or anything like that, but I have noticed an increase in weakness in my right leg, much worse numbness in my hands, and feeling more tired than usual in just the last week or so. My right foot is also numb for the first time ever. Could this just be coincidence or actual side effects from the LDN? The leg weakness and hand numbness have been around for years, but I really think it has probably gotten a little worse in the last week or so.

Any thoughts?

(I'd also like to add that my moods have improved lately. It seems I have a better outlook on things. Again, is this LDN?)
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Post by Loriyas »

I can't comment on your other symptoms as I don't know. But when I started LDN I felt a general sense of well being. That still remains the same today.
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DIM
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Re: Are these LDN side effects?

Post by DIM »

SpottyPoo wrote:I started 1.75 mg 13 days ago. I've had no insomnia or vivid dreams or anything like that, but I have noticed an increase in weakness in my right leg, much worse numbness in my hands, and feeling more tired than usual in just the last week or so. My right foot is also numb for the first time ever. Could this just be coincidence or actual side effects from the LDN? The leg weakness and hand numbness have been around for years, but I really think it has probably gotten a little worse in the last week or so.

Any thoughts?

(I'd also like to add that my moods have improved lately. It seems I have a better outlook on things. Again, is this LDN?)
Wife had similar symptoms for almost one month - something like exacerbation but not so agressive!
Stay on LDN and I believe you won't be dissapointed in the end.
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Sharon
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Post by Sharon »

I started LDN just over two months ago - started at 1.5 mg for one month than to 3.0 mg for next month - just started the 4.5 mg five days ago. I have noticed an increase in fatigue (which is unusual for me) since I started the 4.5 mg. I played 18 holes of golf this morning (I take a cart); so I am a bit tired this afternoon. I have also noticed that my weak left foot and leg seem to be a little on the wobbly side since upping the dose. My WalkAide helps to minimize the wobbly left side. Look on Dr. Bob Lawerence's website or the LDN Trust website - they both have info about symptoms presenting worse when you first start or when you change dosages. I think we are both experiencing the newness of the drug - I am not worried about it yet.

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SpottyPoo
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Post by SpottyPoo »

UPDATE: I took the 1.75 for 15 days and had to stop. Everything was getting much, much worse. Within 2-3 days of stopping, everything that was acting up went back to "normal." I think the LDN made me worse, and I'm very disappointed that it didn't work for me. I will miss the feeling of well being, however. :cry:
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Post by DIM »

SpottyPoo wrote:UPDATE: I took the 1.75 for 15 days and had to stop. Everything was getting much, much worse. Within 2-3 days of stopping, everything that was acting up went back to "normal." I think the LDN made me worse, and I'm very disappointed that it didn't work for me. I will miss the feeling of well being, however. :cry:
If you read my post above the symptoms you refer to are what my wife has had the first few days on LDN.
Fortunately they dissapeared after a month or so and now she is much better, if you stay on LDN you'll see it's benefits!
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SpottyPoo
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Post by SpottyPoo »

Well, I'm from the school of thought that if it's actually making your current symtpoms worse, you should probably avoid it like the plague. There's an underlying reason why it's making the symptoms worse, and I don't want to be stuck with more permanent damage than I've already got. For all that we do know about MS, there is much we don't know. And it's that part of the equation that makes me tread lightly.

I am so glad that your wife is doing well on it. She is a braver person than I. This is just not a risk I am willing to take at this time. Best of luck to your wife, and I hope she continues to do well. :)
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marlena
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Post by marlena »

Most medications result in unintended reactions called side effects. LDN is no exception. Just as every marriage goes through an initial period of adjustment, so too does the taking of LDN bring about a new order of things to which the body needs to adapt. Internal chemistry changes Viagra Dosage, Cialis, viagra, endorphin levels increase, and the immune system is upregulated--a generally beneficial process that can, nevertheless, take time getting used to. Fortunately, the side effects associated with LDN are usually mild and of a transitory nature--and the rewards--in terms of healing, restoration of function, and the cessation of pathology--can be wonderful, even life-saving.
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bab3
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Post by bab3 »

i was so excited in trying ldn , heard such great stuff about it. after 2 weeks being on it i became so so tired couldnt understand why, it actually effected my driving, my eye sight, walking.. never been so tired in my life. i was going to the ms therapy for oxygen chamber befor starting ldn and was doing so well untill i started ldn. cant understand why it didnt work for me , :roll: but i guess ms is different for everyone..
but im happy that ldn works for some... im just gonna keep looking :D
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DIM
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Post by DIM »

Two weeks is so little time to consider LDN can't do anything for you, give it more than a month and see if it works, in wife's case she needed more than 1-1,5 months to stabilize and feel the difference, as you the first few weeks she was tired, exhausted etc!
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Post by annbbe »

DIM wrote:Two weeks is so little time to consider LDN can't do anything for you, give it more than a month and see if it works, in wife's case she needed more than 1-1,5 months to stabilize and feel the difference, as you the first few weeks she was tired, exhausted etc!
DIM, thanks for your positives words. I am 2 weeks from starting LDN on 1,5 mg and I feel awful. I have never been so weak! I am training with my rehabilitant everyday for 60min., today only 30 min., and I just wasn't able to do exercises at all.
Fingers crossed for the future ;).
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annbbe
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Re: Are these LDN side effects?

Post by annbbe »

I am three weeks on LDN and still exteremly weak...
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Re: Are these LDN side effects?

Post by Sandor »

Yes, unfortunately LDN can cause numbness, tingling and weakness for some people, because it happened to me. I wish I'd known about these potential side effects before I started it, but unfortunately there isn't enough information to guide people on these side effects. I've tried to post on LDN forums, but my information doesn't get published. Perhaps that is why we continue to hear that there are no side effects and start a drug that can be devastating to our health.

I was on LDN for 17 days for my autoimmune conditions (not MS, which before LDN I did not have). I purchased it from one of the official and highly respected providers listed on the LDN website, and I began with the very low dose of 1.25, moving no further than 1.5mg. In my case, LDN caused a variety of MS symptoms, beginning with tingling and then burning in my feet, then moving to numbness. On day 18 I stopped the LDN completely due to the increase in symptoms (numbness and weakness). The tingling in my feet stopped the day after I quit LDN, but 3 days after stopping I had more side effects: weakness in both legs, arms and hands, numbness in one side of the body, nausea, eye problems, balance and walking issues, difficulty with fine motor skills, etc. I went to the ER and eventually saw a neurologist who believes it was due to the LDN (even though she has patients with MS who use LDN for their symptoms). So much for "NO SIDE EFFECTS"!

For anyone who experiences these symptoms of numbness, weakness, or tingling for the first time (or a worsening of their MS), I'd strongly suggest that they stop LDN immediately to prevent long term damage. I'm still dealing with the side effects of taking the drug, now 3 weeks ago. I believe it damaged me neurologically, and I'm now trying to get my full function back to where it was before LDN (which was 100% normal). My learning: no drug has "no side effects" for ALL patients. In the case of LDN, it seems that side effects that people are experiencing are suppressed from online LDN forums. It's critical that patients know all about the drugs they're taking, including all (even rare) side effects, so that each of us can make an educated decision. The benefits in my case were definitely not worth the cost. Be safe, and take care everyone!
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Re: Are these LDN side effects?

Post by Agerman »

Hi I'm new to this forum. I have been taking 1.5 LDN for the last 3 weeks for Crohn's. I didn't have any side effects until 14 days into taking LDN. I have been getting a horrible histamine reaction. my forehead, neck, ears all itch terribly at night. I stopped taking the medication one night and the next day the symptoms were worse. Do I need to just hang in there with this? should I take a benedryl? I don't believe this is an allergic reaction as I think I would have reacted much sooner than two weeks.
Just wondering if this is normal as my body is adjusting or if I should stop taking this immediately.
Thank you!
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