Sorry for the hard lesson, Marion. I've often wondered what would happen if I just stopped taking it but I've been too chicken to try it. Now.....I won't.

I called Skip to see if lowering my dose to 3 mg from 4.5 would cause any problems and he said it shouldn't. But, if I noticed things changing for the worse I could just bump it back up to 4.5 mg.

I wonder if you'd have the same negative reaction if you tapered off instead of just stopping cold turkey? I'm not planning to stop anytime soon but Marion's experience made me wonder if slowly reducing the dose would cause problems.

I don't think so Kelly, LDN is not that kind of Med.. DD stopped taking it twice and had 2 attacks. She will never go off of it again.

Apparently we need those endorphines!!! Anything below 2 doesn't work and anything above 5 is too much.

4.5 has been working for you so you may notice a diff with 3, but I don't think so. If 3 seems ok for you, just stay there.

Kelly, I never go up to 4.5 mg. Too much drug for me. It caused my spasms/and or tremors to increase.

Once I got up to 3.0 mg I was fine. I have been off it due to medication, and know I need it.

I am just on 1.5 mg. I can't wait to go up to 3.0 mg again. I have been on that amount for over two years and felt great. I need those extra endorphins to keep me calm, no mood swings, and it keeps the aches and pain away, like I said a few pages back.

LDN and Caffeine, my two drugs of choice. I have been easing away from sugar and fats. I don't like alcohol, or how it makes me feel, so I need the endorphins.

Marion, that was a hard lesson to learn on a road trip. I hope you feel better now and are getting back to normal.

Hi Carol M, with summer coming I want to make sure I am on LDN too.

RoadAction13, The drug LDN will give vivid dreaming but it is the mind that sets the stage of what you dream. It may be that you see it more colorful or remember it better. JMO

I agree with spasms and similar problems can occur if you can't take the 4.5 mg dosage. Are you RRMS? They say it happens to those who are RRMS, more spasticity at the higher dosage.

I opened the 4.5mg capsule, sprinkled 1/2 in small measuring cup, put some water in, stirred it, drank it before bed. Took the other 1/2 still in capsule last night so say 2.2mg. I pushed my daily 1.2 miles in wheelchair, swam 10 laps, did 1 set of curls, cleaned house, and just barely slept the way I would've without all that exercise. I did have interesting dreams which is one of the 2 reasons I want to take it Heck if daytime is the same ol everyday, why not enjoy dreams.

well, it may be my mind that's giving me nightmares, but I'd be very happy not to remember them or have them remembered less colorfully!!

Yeah, I'm RRMS. I dropped to 3 two days ago and my neuropathy seems already less bothersome - could it happen that fast???

lv jd

Sure JD, it could happen from one pill to the next. I took one extra 1.5 mg with my 3.0 mg and it caused bad spasms on that one nighttime dose. So back down again the next night. I find I have to take it 2 to 3 hours before bedtime. I go to bed late and perhaps my body takes longer to metabolize the drug.

I think it can accumulate too in our bodies, maybe too much absorbed, or not work as well over the years of a steady dosage, JMO. So going a bit lower for a few days may be a good thing for many people.

When I worked, I took Provigil so I could drive the long way to work and back without falling to sleep at the wheel. It worked and then seemed to stop. So I stopped it on the weekends and just took it on Monday to Friday and it worked again.

When we use drugs off-label, from the real purpose intended, we cannot be sure how it works in our bodies. So like with many medications, people have to take different dosages, or at different times, to work with our own unique age, body size, other medications we take, and how our bodies use the drug.

@Eddie,
I think you better take the whole pill of 4.5 and stir it well in a bit of water. Then take half of that paste water, which is 2.25 mg. I say this because my pills I have put in with sucrose or avercil (reg. filler like paper, and cheaper) some get lactose-free fillers, but my point is that they do not have to mix the LDN with the filler in the capsule. They can fill the capsule with the drug and then add filler in different machine after, to suit people. It can double the cost, btw.

So you left 1/2 in the capsule, and you took half another night. That other half could have the full dosage in the bottom of it. You may be taking filler only one night and LDN 4.5 mg the next. I can see the color of the drug and filler in my capsules, clearly two different colors.

We are getting the LDN amount prescribed, that we asked for, but the filler is put in like a cotton on top of a Aspirin bottle. To take up space because the drug is such a tiny amount of a 50 mg pill (as an example). Just a tiny chip to get 4.5 mg in each capsule.

Do you get my meaning? Some people order a 50 mg pill (like in Canada or online places) not Skip's. They crush it, and add 50 ounces of distilled water and stir well, and then refrigerate it. They use a medicine dropper, they shake first, and nightly take a dropper full of the dosage they take. I believe it lasts one month.

@Carol M, do you do it this way? Someone on here did, Lady Express did I know.

All just my opinion.

Hi Lady,

When I first started taking LDN I got the liquid version because I hate swallowing pills. It only lasts a month, as you mentioned, and it got annoying having to pick up more every time I turned around.

I switched to the capsules, which, as it turns out, are pretty small. I go to a compounding pharmacy and they use the pure naltrexone powder with avicil as the filler.

C

Wow Lady what a great CHEAP method dropper is! A single 50mg pill = 20 2.5mg doses which costs squat! And if it lasts 1 month mixed, that's plenty!

My capsules when I open them have just 1 color powder (pink) which looks like a crushed pill cause there's chunks so, if I split it, it's all Naltrexone no fillers or they're blended & compressed. I love the dropper idea.

Pink?? My capsules are clear and filled with a white powder. Naltrexone + avicil.

C

My 1.5 mg capsules (from Skip's) are pink. My 4.5 mg capsules are red. Maybe the 3.0 mg capsules are white (or clear)? I'm sure it's the capsule itself that's the "color" and not the medication within. Maybe Eddie gets his rx from a different pharmacy?