Hi Daisy and welcome. Some are more attuned to meds than others, so you may want to go back down for awhile.

Lady, I don't think it matters when you go to sleep. I think the endorphin mechanism takes place in the wee hrs of the morn, anyway.

LarryLDN took his at around midnight, 3mg, and then worked the late shift and it sure worked for him. I take mine, 4.5 mg, around midnight and sometimes don't fall asleep 'till 2 or 3 am. The important thing is to try and take it at the same time every night, before 2am. :)

http://www.larrygc.com/mystory still has all my early days posts... and my latest update 4/17/2010, 7 years on LDN


I take just 3.0, at midnight

Thanks Larry, I beat you by a week..LOL

I hope you are doing well. :hug:

Thanks to a kind soul on this site, I saw a new neuro this week that listened, assessed, and prescribed 3mg LDN (Ampyra too). Tomorrow i'll visit compounding pharm and have them fill script if they tell me they can make it non-time release (right?) and easy on fillers. I see 12am is what some of ya'll take it at. How bout 1/2 hr every night before I close my eyes no matter what the time is?

Thanks

I used to do that but found that I didn't sleep as well when I did. So, I experimented with the times and found that if I take it between 1 AM - 3 AM it works best for me. That's not a problem for me because I generally wake up between midnight and 2 AM anyway....so I just take it then. It's different for everyone so you just have to find your niche. Good luck and I'm so glad you were able to find a smart Neuro!

Your compounder should use pure Naltrexone powder with a fast release filler. such as avicil or lactose etc..

LDN should be taken at, approximately, the same time every night/morning, between 10pm and 3AM.

Welcome to the LDN club and Good luck, Ed..:hug:

I printed and handed the below to pharmacist. I underlined the 3 choices of mixing compounds and said pick 1. I also wrote on the paper "No Slow Release". She said ok to all of it. They left message its ready. Will call them and ask co$t. I'll get it tomorrow. I mightve seen 9:30am on script. Calling now...

Thanks

Edit - Just spoke with pharm - $37! The suspense was killing me! Thats sooo affordable. Im happy :)

FYI Skip's pharmacy in boca
3mg $14.95 per month
4.5mg $19.95 per month
shipping is 5.95
(you can have three months supply shipped for one shipping charge)
mine arrives in 2-3 days

$38 later I got my LDN! Wow I paid alot more for 3mg's then at Boca but..
Made friends with the pharmacist! This may be worth $20/month. I told her about the genitle herpes drug that (id say) reversed MS in someone I spoke with, talked HIV drug prices, I said I wonder if HIV drugs would do it for MS since the one I spoke of was pulled and now being tried oral form for HIV. She said costumers on the HIV drugs (if eat/live healthy) look 100% and you could never tell so side effects must not be so bad.

Sorry for getting off track. I was right seeing 9:30am on script. Says take in the morning on bottle. Will start tomorrow :)

Not to get off track again but I asked her about estriol. She said sure..we compound that all the time! Told her how my neuro dropped me because I pushed him for it. Said she'll look into dr's with open minds for me. Awesome.

LDN should be taken at night between 10:00PM AND 2:00AM

That's what I've been told too and read here. Wonder why dr wrote morning. I'll call tomorrow.

Eddie, if the doctor looked up Naltrexone 50 mg plus, a day, for alcohol and drug addiction, I would say they take that in the morning. It is not the same as Low Dose Naltrexone. He might have made that mistake in time that way.

LDN has a different purpose, it works at night.

If I take it too early, and don't get to bed, I get a sick tummy feeling, like I should be sleeping to get rid of that feeling.:cool:

Good luck Eddie with you LDN. :)

Well I still didnt get to call Dr to ask time to take it so I took it last night 15min before shut eye = 12am.
Woke up at 4:30 and maybe slept 1hr from 4:30 - 7:00 on/off in spirts.
Taking it tomorrow morn after shower!

You should continue to take it at night!

LDN has virtually no side effects. Occasionally, during the first week's use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.

What is the best dosage of LDN to begin treatment with?
For an adult who is not significantly below the normal weight range, the optimal dose of LDN is 4.5mg, taken each night at bedtime; i.e., between 9pm and 3am. One can begin at this dose level. If one were to develop persistent sleep disturbance (i.e., a sleep disturbance lasting longer than 10 to 14 days) after starting LDN, which occurs in less than 2% of users, then the dose may be decreased to 3mg or 2mg.
People who have multiple sclerosis that has led to muscle spasms are advised to begin treatment with just 3mg daily and to maintain that dosage.

If I have to work on a night shift, for example from midnight to 8a.m., at what time should I take my LDN?
Continue to take LDN as recommended above; i.e., between 9pm and 3am. This relates to the fact that the endorphins for each day are always produced in the pre-dawn hours, regardless of the hours when one is awake or sleeping.

all the above information is taken from www.lowdosenaltrexone.org

ExAcTlY!!!!!;)

I'll listen to you's since I agree and know thats when the brain says "make some". I'll take something with it to sleep. Thanks again.
Question - does it effect bowel movement in ANY way? I have hard to manage revised once colostomy. Constipation is no good, loose is a pain to manage.
Thanks

Eddie, I have an auto-immune bowel disease and somehow it went away. The Gastro doc is amazed. I could have either loose or a struggle, and now it is no problem. :)

Some take LDN for Crohn's disease, so I hope you don't have any problem with it. No one here has mentioned any negative effects in the plumbing, both B & B. Good luck.

Thanks Lady and thats great news for you!
I'm happy to report side effect I had (slight sleeplessness) is just about gone after 3 days. Great! I seem to wake up more thirsty then usual which is no problem. I always have bottled water ready to go bedside for tv watching. Anyone else get slightly thirsty?

Ok so after about 1 week of LDN, I notice nothing. Actually I dont even know what to expect. Numbness/tingles supposed to fade a little or at least stop increasing?

I've been out of here for a long time... but just wanted to get back to my fellow LDNers....

I'm a little disappointed in how LDN is going for me.

It seems like it has been a "wonder drug" for so many, and I naively thought that if I started it early in the disease I'd just nip it in the bud. But here I am--2 months into it, and I have a relapse of numbness in the trunk that lasts a few weeks.

Now, 8 months into it, I have increasing sx--my urinary frequency is going up, and I am having the MS hug into my chest. I feel like my lungs are being squeezed and I'm having asthma but albuterol doesn't do a thing. Still waiting to see the neuro, but I'm guessing it's the "hug".

If this is how I am a few months in LDN, I shudder to think what the hell is going to happen to me over years with this disease. LDN was my biggest hope. These days I'm pinning my hope on CCSVI, but who knows if I'll even get a chance to bat at that one.

Any advice? Thanks in advance, all! :hug:

Eddie, a week is not nearly enough time to see any benefits. Give it some time. It has to bring back, to a more normal state, so many changes in your body.

poetic license, first what dosage are you taking? I still get the hug, that's a "B" to get rid of, and I get burning of legs and feet, that I don't think there is any hope for. I won't add any other meds.

But so much of the other crapola has slowly gone away, even some residual damage from eons ago. I started on 12-15-08. I am on 3.0 mg. The CRABS made me a lot worse. I hate to think where I would be if I didn't switch to LDN. I have had MS for 30 + years. I was sooo much worse off, on any of the other drugs.

We are all different, give it more time. If you are on more than 3.0 mg you might have to lower it. If you are on 3.0 for 8 months, you may have to try to go to 4.5 mg. We have to find our own correct dosage. But slowly.

I am not a guru on this at all, many here have been on it a long time and feel so much worse when they run out of it.

Others will come on here and give their knowledge, I am just stating my opinion.

I hope it starts regulating your body very soon poetic license. :hug:

Eddie you need more time on it.:hug:

I believe in the CCSVI procedure too. That might help with fatigue, cog-fog, eyes, etc., if we ever get a chance at it. The darn Big Pharma's have gotten to those who regulate, and now want more trials on it. :mad:

Hi Eddie,

I started taking LDN 11 months ago. The first thing I noticed (after a month or so) was that I was way more tolerant of heat. Gradually I noticed that I was able to get a lot more done without getting fatigued. I'm busier than I've been in years and I'm handling it just fine - I don't need that day or two to recoup after a hectic week. I've stopped budgeting my activities.

On the other hand, nothing has changed regarding the altered sensation in my feet. They still tingle and feel numbish, although they really aren't numb. My ankles still "feel" stiff but they move normally.

If I had to sum up the effects for me, I would say that LDN had an effect on function, not feeling. Overall, I'm very happy and have had no side effects. I'm on 3 mg.

Oh, one other thing - before starting LDN I was having trouble with my right eye being dry all the time - for about a year and a half. Sometime after starting LDN, it returned to normal. Have no idea if the two are connected but nothing else changed.

I hope that if you hang in there, you'll gradually notice little improvements that over time become big improvements.

C

When I first started LDN, 7 yrs ago, I expected too much and was very disappointed that, it didn't make me better, on the spot.:rolleyes:

I Struggled, stopped, started, raised the dose, lowered the dose and finally settled on 3mg dose for awhile. I raised my Paxil dose and tried to settle in and enjoy the little improvements that were happening.

LDN was not going to cure my MS but, I did notice better balance (I could close my eyes in the shower and not fall over), better bladder control, more strength and just felt better/healthier all around.

The endorphines were doing their thing and I was finally satisfied and even happy with the results.

My DD does better on her LDN and is in remission. She went off of it for a couple of weeks and had an exacerbation. When she resummed taking it, she, slowly went back into remission.

Like any other Med, it does not work the same for all and for a very few, who may be allergic to Naltrexone, it doesn't work at all.

Unless you are allergic, give LDN a good 6 mos to a year, before giving up on it.

Best wishes..:grouphug:

Thankyou and 3mg is my nightly dose. I'll keep the hope up. Honestly, I swear my arms felt less numb the night I got script. Didnt fill it yet, just the "hope" feeling I swear made it a lil better. Tysabri #7 is next week.

Poetic J please give us your dose.

Eddie, I get thirsty and drink a lot more water since on LDN. But that's okay: good lubrication for the bod. Good luck to you!

Had my phone appointment with LDN doc today. Told him about the two episodes of ON I had over the past two months. He suggested that I add a 1.5 mg. dose of LDN at noon in addition to my regular 4.5 dose (making a total of 6 mg daily). He said if I noticed increased spasticity to go off and try again in a week.....sort of like I did when I was increasing my 3.0 mg dosage to 4.5 mg. I asked if I should still try this since my ON had completely cleared up and he said I should. He said there was obviously some inflammation somewhere to cause the ON and, if it were him, he'd start the additional dosage now and as long as it didn't present any problems, to keep taking it. We'll see how it goes! Has anyone done this before? If you have, how did you do on the increased dosage?

I have never heard of anyone taking higher than the 4.5mg.....
according to the lowdosenaltrexone.com website, dosages above 4.5mg are likely to block endorphins for too long.....and interfere!!

"The therapeutic dosage range for LDN is from 1.5mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness"

I think Doc S is just experimenting, Kell. I have my doubts, but, temporarily, it shouldn't hurt. I think Dr Bahari did that a couple of times, but I don't think it worked?

Use your own judgement..:hug:

What I find interesting is that the additional 1.5 mg he told you to take Kelly was at noon, not at bedtime. Why do we take it at bedtime, if at noon it may have a benefit too? I thought we blocked and made more Endorphins at night while we sleep? I am getting confused here. :confused:

Do you think it would benefit in other ways? Like my Neuro said when I relapsed, that maybe I should up my 3.0 mg to 4.5 mg to have prevented a relapse in the first place. :confused: I am wondering what they know and we don't, or should I say I don't!

I have blood work to get done soon, so I think I might try to add a 1.5 mg at noon, in addition to my 3.0 at night, to total 4.5 mg after the blood is taken next week.

At night I couldn't handle 4.5 mg for the one week I tried it. Maybe in a divided dosage it may work better for me too. Just thinking out loud here. :)

Kelly I read somewhere about 5.75 mg, but I don't remember where or why. Or even how, unless in the liquid form, you could get that dosage. So 6.0 mg is not far above what I read. I have to find out where I read that. Now that will bug me not knowing.:cool:

Let us know if you try it, and how it works for you, okay? Good luck Kell.:hug:
I'll do the same next week, add a noon dosage.


.

Yeah, after I hung up I thought of all sorts of questions to ask.......:rolleyes:

I got a prescription for 1.5 mg in addition to my usual 4.5 mg so that I could try this experiment out. I get the feeling it's going to give me spasticity in my legs but time will tell. It's worth a shot just to see if there is any improvement. There is some sort of inflammation on my left side as my mid section is mildly numb and there is one little patch on my back that is itching like crazy!

Our Hero And Founder of LDN
 

May he rest in peace..... Dr. Bernard Bihari 1931-May,16,2010 :(

Oh, no! :( Had he been ill? I haven't read alot about him but this is so sad.

I started my additional 1.5 mg dose today. I took my regular 4.5 dose at about 1 AM.....then my 1.5 dose about 11 AM. Haven't felt any different but wasn't really expecting to. I'll keep this up and see if I notice any improvement over the next month or so.

Okay, I've taken the additional 1.5 mg dose for 6 days. I noticed nothing different at first. After a couple of days my left leg started hurting (spasticity). Then my right hand/arm became very, very weak. This is the hand that has been numb for several years. I can still use it but it's hard to write and hard to grasp things. It got so weak that I couldn't even hold my hairbrush! :eek: I stopped the additional dosage and I can already tell a difference this morning. No leg pain and my right hand is working much better. Needless to say.....I'm not going to take the extra dose anymore! :rolleyes:

Kelly, be sure to tell Doc S, so he won't think this idea of his worked. :rolleyes:

I will. Hey, Sally.....does Dr. S have an email address? If he does can you PM it to me?

He suggested this increase in dosage after I told him about my bout of ON. He said if it were him he'd up his dosage of LDN. I asked if I got spasticity or any other negative sx if I could just stop the extra dose and he said yes. I got these same sx the first time I tried to go from 3.0 to 4.5 mg. After several tries I was able to tolerate the 4.5 dose. I could probably try increasing my dosage again and it might work.....but I really don't feel like I need any extra. The ON has completely cleared up (and quickly, too) and I feel really good on the 4.5 dosage.

Now, I just have some extra LDN should I ever run out! ;)

Kelly, I don't have an e-mail for him, sorry.

I found that I heal a lot faster from occasional infections or illnesses, as well, with LDN. :)

Question..If exercise increases E production, how about taking LDN an hr pre workout? I'm going to try that tomorrow or Tues before I push my mile in wheelchair. I hate the drymouth at night and I drink about 1/2 gallon water/day plus not getting a solid nights sleep. Ive been on for almost 1 month and nothing yet...

I haven't done my mile since previous post. Been too hot, busy, got in pool yesterday for 1st time this yr, 93F right now so not today. Just got back from local monthly MS gathering. I said (when my turn came in the group circle,) "if exercise produces endorphines and LDN keeps me up at night, why not take it before workout?" Then said thats what i'm gonna do. They all nodded.

You are not understanding what LDN does for MS!! If you don't take it at night/early morn , when endorphines are reproducing themselves.... to temporarily block that reproduction, so that the body is fooled into increasing the rate of endorphine production, then LDN will, most likely, not work for you.

Good luck..:hug: