I found the LDN "forum", with fourteen gabillion replies...is there someplace I can find out general information, or can one or more of you who takes it give me kind of an encapsulated version?

I want to have some information of my own before I go see my neuro, and I've heard that LDN is something doctors don't always prescribe...why?

I stopped taking Copaxone a couple of weeks ago because of side effects (long story) which went away...so I think I'm going to have to make some decisions.

LDN downside? Side effects?

Here is a good website for LDN : www.lowdosenaltrexone.org.

I love it. I've been on it now for a little over 2 years and I'm very pleased with it.

I still have sx sometimes......and I've had a flare or two.....but I recover from them very quickly and without the need for IVSM or other steroids. To me, that is huge. Steroids weakens our bones so badly. And with us prone to falling that can have devastating outcomes.

The only side effect I experienced with LDN was when I attempted to increase my dosage from 3.0 mg to 4.5 mg. I got spasticity in my legs that kept me awake at night. I went back down to 3.0 and waited a month or two before trying the higher dosage again. It took a few attempts but now I'm on the optimal dosage of 4.5 mg.

Vivid dreams are another common side effect from LDN. Not bad dreams....just colorful and very lifelike. They're very entertaining!

I am so glad I tried LDN. It's very inexpensive (3 month supply for about $50....works out to be about $16 a month).

I feel like I'm doing something positive and proactive in dealing with my MS.

I've been on LDN for about 5 years, 3 mg. It has helped me, I don't have attacks anymore, it does not keep it from progressing, but it has slowed it down for me. Tell your doc you have nothing to loose, the dose is so small, there is no side effects and you might as well try it. I took avonex for a while, the side effects were so bad for me I stopped it, and started having attack after attack, then went on LDN and they stopped, it will take a while for it to work for you, it isn't for everyone, I have a friend that has PPMS and it didn't help her. You just have to try it. Everyone to their own. Good luck, let us know.

Ditto!!!!! Except I've been on it for 7 yrs, this April.

Hi Blessings!

I've been taking LDN for 20 months now. It was about a month before I could take 4.5 mg. dose.

I was able to convince my GP to Rx it after he read the info I took with me. I printed it straight from the website Kitty mentioned, and highlighted a few key phrases.

He basically shrugged and said, "Its worth a try."

I'll be interested to know what you decide. Good luck!

Two things come to me: Do neuros hesitate to prescribe? Is it usually through your PCP?

And...the spasticity concerns me. I take quinine (I know, I know) for the muscle spasms I was having. Don't want to go through THAT again!

Yes and No...Some Neuros do not go outside the ABCR box. Most PCPs will prescribe it, if the are aware of it.

The spasticity is a part of MS and it comes and goes, with or without LDN. Since LDN causes our endorphines to increase, you may get an up feeling and your legs may feel stiff and you may be unable to sleep.. If it doesn't go away in a couple days, then reduce your LDN untill you are comfy (usually 3mg/ 2mg) and stay there for a few months, before trying to increase it again.

someone said it doesn't stop MS from progressing....however, I had heard many stories of 5-6 years without a relaspe and even decreased or no new lesions on the MRI...with use of LDN.

The ABCR only slow relaspes about 29%.....seems as if the LDN slows it at least or more than that???

I just started last friday (one week today) at 1.5mg and will stay there for two to three weeks and increase to 3mg. It is said that MS patients that get leg spasms and cramps....that they may need to just stay on 3mg.

I have a real hard time understanding the big push for the ABCR if they only slow progression at around 29%.....and the horrible side effects, not to mention the blood work to check liver function.

does anyone know if there are LDN studies of the rate of progression or relapses in patients who have taken LDN for a length of time?

I have had no relapses in the 7 yrs on LDN and have not progressed in disability.......except for the short flares caused by illness=a cold or infection=a UTI and I have progressed to 70 yrs young=lack of strength.

My MS symptoms lessened in the first 2 years and have remained the same. I felt better and healthier in the first year and still do to this day.

My DD is also on LDN for the last 5 yrs and has had one relapse, when she stopped taking LDN for a week. She is back on it and back in remission.

My only regret is, not having LDN when I was RRMS. I was SPMS when I started and have some permanent nerve damage and symtoms that are here to stay.

LDN usually works better on RRMS peeps, as, if you can halt or shorten the exacerbations, you can halt or slow the progression.

There have been limited studies, but have been too short and not enough people, to prove a lot. There is no money in big pharma doing a big study, on an approved drug.

Good luck to all who are giving it a try....and Good luck on educating your Neuros, so they will prescribe it for you.

If the Mods want to transfer this whole thread to the LDN sticky, it's fine with me.....that way we can keep it all in one place, for referrence.