LDN and side effects

[Hawk 44]

I had been using Rebif for 2 years, and grew tired of the side effects I was having. I started LDN one week ago today and my only noticeable downfall is increased stiffness. Just wondering if anyone had the same experience with LDN and how long it lasted.

Fondest regards ... Hawk

[Sequoia]

Increased stiffness (spasticity) is a fairly common side effect of LDN. For some people it wears off after a while, but others may need to reduce their dosage. If you're taking 4.5 mg of LDN, you might try going down to 3.0 mg if the stiffness doesn't improve in a week or two.

[Hawk 44]

Thanks for the reply. I'm only taking 3.0 mg, so I guess I'll give it some more time and see what happens.

[Margaret Hart]

LDN -questions as I consider starting it

My neuro and family doc didn't want to prescribe, as it hasn't had clinical tests for use with MS. I found a doctor in PA who is willing to prescribe after reviewing my paperwork and a phone consult (I'm in CNY). Do any of you have experience with that type of arrangement? My neuro, while sympathetic, is worried about his license if he would prescribe, or even recommend, LDN for treatment of MS. Are there any concerns if I take LDN and he continues as my neuro? The prescribing doc will have on-going phone consults with me to be sure all is well with me on LDN. Thanks for your thoughts.

[sich59]

I just started taking 3mg of LDN a couple of weeks ago and haven't noticed any additional symptoms

[knuckle]

Some people experience stiffness in their legs during the first few months of LDN therapy, some don't (I didn't). I use the same PA doc for my LDN and 4-AP. Phone consults beat a doctor's waiting room in my opinion. He has alot of experience with both drugs and his fee is very reasonable.

As for a neuro worried about his license...it sounds like he is more concerned about his bank account than your health. Show me a neuro who has lost his license for prescribing off-label use of an FDA-approved drug for MS. They do this all the time and Providgil and Amantadine for MS-related fatigue is just one example. The chemo drug Novantrone was not developed for MS.

LDN is taken at one-tenth the daily dose of FDA-approved Naltrexone which is considered safe for pregnant mothers. It has been in use since the 1980s and has a better safety profile than many over-the-counter painkillers, like aspirin.

In the UK, LDN is quickly becoming accepted as a first line MS therapy and I suggest visiting www.LDNaware.org and clicking on the UK page to see all MS organizations listed.

Knuckle

[Chais Papa]

I get a little morning stiffness and occasional vivid dream.
I was off LDN for about a month. I asked my neuro here on island to prescribe it and he agreed after I gave him the info about LDN. I did use the PA doc.
When I was off LDN I did notice that I was more fatigued, my heat tolerance wasn't as good and my sleep wasn't as good. LDN definitely helps to improve my quality of life, everything else is a bonus.

[hunterd]

My neuro and family doc didn't want to prescribe, as it hasn't had clinical tests for use with MS. I found a doctor in PA who is willing to prescribe after reviewing my paperwork and a phone consult (I'm in CNY). Do any of you have experience with that type of arrangement? My neuro, while sympathetic, is worried about his license if he would prescribe, or even recommend, LDN for treatment of MS. Are there any concerns if I take LDN and he continues as my neuro? The prescribing doc will have on-going phone consults with me to be sure all is well with me on LDN. Thanks for your thoughts.

my neuro won`t prescribe it either. but she said it was ok with my meds.

[Margaret Hart]

LDN

Thanks for your feedback.

[Margaret Hart]

LDN- drug holidays?

I've heard some recommend taking a drug holiday every so often with LDN (and perhaps with some other meds as well).
Do you have any experience with this on a regular basis?

[cjthatsme]

I started LDN a little over a month ago (4.5) and I was having quite a bit of stiffness, it has started to ease a bit over the last week or so. I love being on it.

At first, I did have the vivid dreams but they are getting better. So far, I am doing much better with the heat, a fan works for now. May need the A/C next week, but I'm going to hold out as long as I can.

[cara_lea]

no stiffness but lot's of other problems

I logged in here after not being on for quite a while to ask about LDN side effects.

I started it this last Tues at 100mg per night (we will go up to 3 over the next month). I haven't a had any more muscle stiffness than usual
However, I've been feeling really bad since I started it; horrible insomnia, super fatigued (yet with a kind of a speedy-'knee bouncing' feeling), yesterday terrible headache that wouldn't go away and then last night and this morning nausea.
Now...I just got done with a long drive which usually takes me a couple of weeks to recover from and I'm pretty stressed right now anyway so all of these symptoms might not be the drug but I wanted to know if any of you had any of these side effects when you started it.

I know that one can not be on any kind of opioid. My sister was saying that she understood that it kind of made those drugs ineffective. I suddenly thought- what about our natural opioid and endorphins? Does LDN interfere or react eventually them?
Or eventually will it make them less effective so that pain tolerance is reduced? I have two herniated disks which are very painful but I am blessed with a fairly high pain tolerance which helps me deal with it fairly well; I am able to manage it with Advil much of the time while going through occasional periods of hydro-codone use. Obviously I won't be able to use the effective pain killers at all anymore and don't want my pain tolerance to go down at the same time.

Thank you all in advance for your feedback.

[Sequoia]

I logged in here after not being on for quite a while to ask about LDN side effects.

I started it this last Tues at 100mg per night (we will go up to 3 over the next month). I haven't a had any more muscle stiffness than usual
However, I've been feeling really bad since I started it; horrible insomnia, super fatigued (yet with a kind of a speedy-'knee bouncing' feeling), yesterday terrible headache that wouldn't go away and then last night and this morning nausea.
Now...I just got done with a long drive which usually takes me a couple of weeks to recover from and I'm pretty stressed right now anyway so all of these symptoms might not be the drug but I wanted to know if any of you had any of these side effects when you started it.

I know that one can not be on any kind of opioid. My sister was saying that she understood that it kind of made those drugs ineffective. I suddenly thought- what about our natural opioid and endorphins? Does LDN interfere or react eventually them?
Or eventually will it make them less effective so that pain tolerance is reduced? I have two herniated disks which are very painful but I am blessed with a fairly high pain tolerance which helps me deal with it fairly well; I am able to manage it with Advil much of the time while going through occasional periods of hydro-codone use. Obviously I won't be able to use the effective pain killers at all anymore and don't want my pain tolerance to go down at the same time.

Thank you all in advance for your feedback.

Are you really taking 100 mg per night? The usual therapeutic dose of LDN is 3 mg for women, 4.5 mg for men. If you're taking 100 mg, that's way more than you need!

If so, that would explain the side effects you're experiencing (if they are indeed caused by the LDN and not just coincidental).

[cara_lea]

Are you really taking 100 mg per night? The usual therapeutic dose of LDN is 3 mg for women, 4.5 mg for men. If you're taking 100 mg, that's way more than you need!

If so, that would explain the side effects you're experiencing (if they are indeed caused by the LDN and not just coincidental).

doh
uhmmm no, no, that wasn't it. not 100 mg a night but 1mg a night.
sorry 'bout that....

thank you,'
c

[cara_lea]

doh
uhmmm no, no, that wasn't it. not 100 mg a night but 1mg a night.
sorry 'bout that....

thank you,'
c

I'm sorry about the impudence of that last post. I was just joking about how completely confounded by numbers I am these days.

In fact...I'm rather confounded by just about anything lately and I used to be a sharp cookie!
I'm not sure i can deal with this LDN too much longer..I feel so spacey and almost out of body, I often feel that I can't tell if I'm dreaming or awake. And I'm still worried about it messing with my own body's ability to produce these helpful chemicals on it's own.

Thank you again for your feedback Sequoia, that dosage amount needed to be clarified.

good health to everyone,
cara