low dose naltrexone.... LDN?

[MS w/MS]

I just starting taking LDN last night. Read some previous post about it. Want to know how long before I see any kind of results? From what I read, it seems kinda like a no brainer to try it.

mark s.

[lady_express_44]

What dosage are you starting with, Mark?

I started on 3.0mg, and I noticed several small differences within a few days, and many great improvements within a week. Admittedly, I am one of the lucky (apparently 2/3) who got symptom improvement, as not everyone does .... and definitely not all are AS lucky as was in that regard. I saw HUGE improvements, and quickly!!

The GOAL of LDN is to stop relapses and slow disease progression, even though many of us talk our neuro's/doc's into it by suggesting it is for symptom improvement. Obviously, it takes time to see if it works for relapses/disease progression, but (anecdotally) most people who stick it out have reported back that it seems to be working well for them. Symptom improvement is really just a bonus though.

Apparently a lot of men (and very tiny women) can not go above 3.0mg for some reason, although some do get up to 4.5mg. If you are starting at 1.5mg, it may take till you get to 3.0mg to see any improvements and/or side-effects ... each of us is different that way. Just keep in touch on the forum, and there are enough of us here to guide you through.

Did you get it from Skip's?

Some symptom improvements are insidious too, so you won't notice till weeks or months down the track. Suddenly you'll realize you aren't getting up in the night any more, or you no longer use your cane at times that you did previously. It seems we've often lost many functions over a long time without really noticing, and we often gain them back (on LDN) without noticing too.:cool:

Good luck!!

Cherie

[bafriend]

I started with 1.5 and gradually increased to 4.5 mg. This is the best year I've ever had with my MS. I just keep feeling better and noticing little improvments.

I really work hard on staying as healthy as possible. Good diet, supplements, and aqua therapy for balance and strength.

It's not a magic wand but definitely has offered me more symptom relief and less disease progression during the past year.

No More ABCR for me.

Best of luck, Betty

[MS w/MS]

My doctor has me starting out at 4.5 mg. I got it at the UCSF pharmacy. I am hoping to find somewhere closer to home in San Jose. Is it not an item most pharmacies carry? What is Skip's? An online pharmacy? After reading you responses and doing some research, I can't believe I didn't try this sooner!

mark s.

[nuthatch]

Hi Mark,
I've been on LDN 3.0 for more than 4 years now. I get it through the mail from Skip's pharmacy, which is in Boca Raton, Florida. They have been distributing LDN for many years now. Skip is a speaker at the yearly LDN conferences.
Drop me a private message and I'll be happy to provide their address and phone number.
Joan

[lady_express_44]

My doctor has me starting out at 4.5 mg. I got it at the UCSF pharmacy. I am hoping to find somewhere closer to home in San Jose. Is it not an item most pharmacies carry? What is Skip's? An online pharmacy? After reading you responses and doing some research, I can't believe I didn't try this sooner!

mark s.

Since you hadn't researched it before now, does that mean you never asked for it, it was just recommended to you by a doc? I know that the UCSF did a trial not too long ago, and the results were good . . . maybe that's why.

http://www.ldners.org/research.htm

It's good if you had no side-effects starting out with 4.5mg. You may start seeing some symptom improvements fairly quickly . . . or over a longer period . . . we are all different.

Skip is the most experienced in compounding LDN. Naltrexone (as an approved drug) is normally only sold in 50 mg pills, but since we need only 4.5 mg, he buys the PURE drug and compounds it (with additional "fillers") into the proper dosage capsule. He has to do that because the drug itself is only a couple of 'granules' . . .

Some pharmacies just crush the 50 mg pill, which means there are more "fillers" when it's compounded into it's proper 4.5 mg dosage. Also, some pharmacies try to use a filler that is too slow release for this med. That's why most people go through Skips. (He is also the cheapest out there, it seems).

I have to buy mine in Canada, so I get it mine compounded in a liquid form with NO fillers.

Cherie

[lady_express_44]

I started with 1.5 and gradually increased to 4.5 mg. This is the best year I've ever had with my MS. I just keep feeling better and noticing little improvments.

I really work hard on staying as healthy as possible. Good diet, supplements, and aqua therapy for balance and strength.

It's not a magic wand but definitely has offered me more symptom relief and less disease progression during the past year.

No More ABCR for me.

Best of luck, Betty

Hi Betty. Nice to hear from you, and to know that LDN worked out well for you too. :)

Cherie

[Braindead]

http://autoimmunedisease.suite101.com/article.cfm/glutamate_excess_in_multiple_sclerosis_variants


I might give LDN a try because is counters the nerve cell death problem caused by "excess glutamate". The body, our bodies cells produce it and it is BAD, so taking more orally is not a bright idea.

I believe that MS is a two stage disease. The CRAB+ drugs help primarily with the INFLAMMATORY STAGE. There is not much to counter the 2nd stage of MS the DEGENERATIVE STAGE.

After about 10 years or more of R/R INFLAMMATORY MS the neuro-degenerative stage shows up and results in great loss of lower limb mobility.

It may be that folks who have had MS for 10 years or more may get the most benefit from LDN. If MRIs show continued new enhancing lesions then standard CRAB+ treatments should be continued.

I have not had a new or enhancing lesion in 7 years but I am having more trouble with the use of my legs. I fell I am now in the second stage of MS and that taking meds and supplements that lower glutamate neurotoxicity(2nd stage MS) make sense for me now. LDN, tocotrienols and Curcumin all seem to help in this task. I have a couple other "things" that counter this excess glutamate but I need to review the studies before I post them here.

Braindead

http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf
.
.
http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

[gonnamakeit]

Braindead,

Thanks for the link. It is very informative. What kinds of tocotrienols are you taking?

I am concerned that you are getting weaker and falling and wonder if they are really helping you.

gmi

[gdmcor]

I'd give LDN a try, but am afraid that the caffeine in it may keep me awake at night or make me more jittery during the day. :eek:
I only drink de-caf in the morning.
Anyone on LDN have a problem with that?
Gretchen :)

[lady_express_44]

Naltrexone is a opioid antagonist, and I've never heard of it containing caffeine. :confused:

Cherie

[gdmcor]

Hmmm.....I must be thinking of some other drug people use for MS that has caffeine in it.


Are there any adverse side effects from taking LDN that anyone has noticed? Thanks for the info! Also, is it very costly?

Gretchen :)

[Erin]

Hmmm.....I must be thinking of some other drug people use for MS that has caffeine in it.


Are there any adverse side effects from taking LDN that anyone has noticed? Thanks for the info! Also, is it very costly?

Gretchen :)

From what I've heard, it's not expensive at all. Especially compared to the CRABs.

I'm just waiting for my neuro to decide if he'll Rx me some. I'd love to try it to see if I'm one of the people it would work on.

[nuthatch]

I've been on LDN at 3mg for 4 years now. I get it through the mail from Skip's pharmacy and pay around $51, including postage, for a 90 day supply. As far as I know, there is no caffeine in it, I think you may be confusing it with something else. . . Procarin?

I was not doing well on Avonex after 2 years on it. My neurologist initially would not prescribe LDN, so I had my GP write a script for it. She felt that it would do no harm, so was willing to let me give it a try.
I very quickly felt improvement, especially with my fatigue level, and have remained stable ever since.
Last year I had an MRI for no reason other than the fact that I had not had one since starting LDN. I have no new lesions since starting LDN. My neuro is now a believer, and recently wrote the script for it himself! Guess I had to be the guinea pig for him, but it was more than worth it for me!

[gonnamakeit]

If any of you live in the Phoenix area and have a physician who prescribes LDN for you, please PM me with their name. I would try it if it were available for me.

gmi

[gdmcor]

Nuthatch, Yes it was Prokarin I was thinking of - thanks. It's the MS scrambled brain that comes up with these things. It's quite entertaining at times. :D

I'm doing so well on Vit. D, B-12, B complex and regular exercise, that I wouldn't want to add anything to the mix right now. I also take Celexa for depression and a small dose of Klonopin to keep anxiety at bay.

However, that could change in the future and LDN would be something I would consider.
Gretchen :)

[edannajayne]

http://www.thepetitionsite.com/1/funding-of-LDN-trials-in-Canada

The above link is for a Global petition for governments to fund clinical trial of LDN. Maybe, this way our Dr.s will take it seriously and prescribe it AND have it covered under health plans.

We have to speak up and be heard!!

Peace and Light :)

[Agent]

I've been on LDN since April 2004. When I had my Steroid treatment in 2003 for ON, I was 6 foot 3 inches, 245 lbs.

I'm still 6'3", but I'm down to 205, and have been as low as 198 recently. I'm still taking Copaxone, too, but am not taking it every day.

I feel like a million dollar bill....except that LDN STILL has a Speed affect on me, and I get it from Skip's, so it's just me, I guess.

That's okay, even with a major legal battle testing my Stress/Attack/Relapse level, I'll take the Speed Demon over having to nap all day.

I saw another post saying that this might be turning into the LDN forum, but I haven't seen anything on LDN for a while. I'm not coming to this site often, as I've been too busy.

I invested when the Board needed upgrades, so I'm hoping it survives and thrives. Maybe everyone's treatment is working better (and I know that's not a 100% statement, and I truly feel for those of us who are the worst of the worst).

It's still the place to start and be for all of us.

God knows, many of us thought we had a Brain Tumor or Stroke before we ended up here...

LDN, in tandem with Copaxone, is working so well for me, that I've lost the priveledge to even MENTION I have MS by my wife. I'll let her live that little fantasy and pray that she doesn't get another reminder, at least anytime soon!

:o

Love Live BrainTalk! ;)

[lady_express_44]

Agent, you must have gotten on LDN before there was too much damage ...?

I did see great improvements, perhaps more than most do. I'm thankful for that . . . but I was already many years into the disease process.

I'm glad I haven't progressed though.

Cherie