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Posted 3/17/2014 2:43 PM (GMT 0)
So I started ldn at 1.5mg for one week, moved to 3mg for two weeks, was seeing some great improvements then upped to 4.5mg two nights ago, and since then things have gone downhill a bit. My mood and energy are lower too. I assume that means I should stay at 3mg? Has anyone else done better on 3mg compared to 4.5mg? I know that you CAN take too much, and block the opioid receptors too long, is there a sure way to determine the right dose for an individual?
Posted 3/17/2014 3:41 PM (GMT 0)
Weird. The same thing happened to me with my Grape Seed Extract. I started taking one capsule per day and got slightly better, took two capsules per day and got incredibly better, took three capsules per day and got worse. I went back to two capsules per day and now I have returned to being much better.
Posted 3/17/2014 3:44 PM (GMT 0)
I guess more is not always better eh? Maybe at 3 pills the gse started killing off your good guys too?
Posted 3/17/2014 3:50 PM (GMT 0)
I think everyone has an individual threshold, so you'll have to experiment a bit to find your sweet spot. I think if you did well on 3 mg, then that could be what your body tolerates and needs. :)

The data seems to show no benefit above 4.5 mg and everyone seems to have variable doses below that number (1.0 - 4.5 mg).

From my own experimentation with LDN ( and you could classify this as an anecdotal report ), I found 1.5 mg to be more than enough for my needs, though I no longer take it.

Hope this helps!
Posted 3/17/2014 3:50 PM (GMT 0)
Hi Laughingduck,

I'm interested to hear your responses. I just restarted LDN last week after having originally tried it a couple years ago but having to get off it without being able to see if it would work for me.

I wasn't able to do the 4.5 mg without it making me really depressed. I've been on 3.5 mg, but I feel really groggy and am having some slight nausea and headaches, so I think I'm going to try 3 mg for a while. The place where I LDN compounded has a page that talks about how 3 mg used to be the recommended dose:
http://www.thecompounder.com/alternative-treatments/autoimmune/low-dose-naltrexone/prescribing-low-dose-naltrexone
So it doesn't sound like it would be any less effective at the lower dose.

I'm hoping other people chime in here. I'm wondering if the grogginess, headaches and nausea eventually go away, or if I'm going to have to lower my dose substantially. The strange thing for me is that while I've heard it can give people insomnia, I actually sleep like a rock on it, and then I'm groggy the rest of the day.
Posted 3/17/2014 8:27 PM (GMT 0)
Thanks SG. Were you on it for uc? Wh did you stop?

October, this reason I started at only 1.5mg is to minimize any possible side effects. Maybe you would do best starting really low too, since you seem to be sensitive to it? To get a lower dose I just broke a 4.5 capsule in water and divided up the water into 3 parts. Also, when you mention headaches it makes me wonder what filler the pharmacy used? Ive seen headaches associated with avicel filler. Mine is avicel and it doesnt bother me (although now I think about it I do have a slight headache too, hmmm), but maybe you are intolerant to your filler?

I guess I will go back down to 3mg and see how I do there again. I may try going up again at some point and see if I get worse again just to make sure it's the increased dose and not something I ate or something thats making things a little iffy. I will let you know.
Posted 3/17/2014 9:24 PM (GMT 0)
I know that some people have found that the optimal dose is usually between 3 - 3.5mg. If you have found that 3mg is enough and helping you, you don't need to go any higher as of right now.
Posted 3/18/2014 6:29 PM (GMT 0)
Thanks, LD. My LDN was compounded with avicel, so maybe that is the cause of the headaches. I didn't even think of that. I wonder if it's something you can eventually get over and tolerate better. When I first started LDN I did titrate up after feeling really bad at the 4.5, but I'm just getting off prednisone, and I'm afraid of getting much worse, so I'm trying to tough it out with the dosage around 3mg, in the hopes that it may work better.

Oh, I was on LDN for Crohn's colitis, and I got pregnant shortly after I started it. My OB wasn't comfortable with my continuing to take it, so I stopped. I flared horribly and probably would've even if I stayed on it since my hormones seem to really affect my disease. I had my GI begrudgingly let me try it again, since he doesn't think it will do anything. I'm hoping it proves him wrong. :)
Posted 3/18/2014 6:38 PM (GMT 0)
LD, sounds like 3.0mg is your correct dosage.

October, avicel is very problematic for many. NOt just headaches, but also stomach cramps and Diarrhea.
I would suggest you try it with sucrose filler, which is the hypo-allergenic filler.
Posted 3/18/2014 6:45 PM (GMT 0)
Went back to 3mg last night and feeling better today so I guess Ive found my sweet spot! Im glad actually, this way i have something to move up to should 3mg stop working. Thanks!
Posted 3/18/2014 6:57 PM (GMT 0)
LD,

Actually once you are in remission with the LDN, it's a good idea to "pulse it" to keep your immune system guessing.

The way I do it is twice a month, I take a 4 night hiatus ( each time) and skip the LDN for those 4 nights, and then resume it on 5th night.

This is a good way to keep you immune system on its toes, and to ensure the LDN will work for YEARS to come.

P.S. Funny thing, whenever I write LD, my brain thinks of Larry David ( of Seinfeld and Curb Your Enthusiasm - absolutely LOVED those shows!)
Posted 3/18/2014 7:03 PM (GMT 0)
LD,
I'm so glad you're feeling better and have found your sweet spot. :) Please keep us posted on if it gets you to remission. I'd love to follow your progress.

InSoFla,
Thanks for the tip. I had no idea that it could cause stomach cramps and D. Now I don't know if the D is from my Crohn's or from it. :( I may have to stick it out for this batch, since I don't think I can do anything about the stuff that I have already, and I ordered it from out of town. I guess I'll have to stick it out for the next three months, but it's good to know there are alternatives. (Sorry to hijack your thread, LD.)
Posted 3/18/2014 7:07 PM (GMT 0)
October,

When I did the LDN with avicel, I got really sick: bad headaches, gripping stomach cramps, and liquid D - all from the avicel, which as soon as I stopped the bad symptoms stopped too.

Please don't stick it out another 3 months.
Call your compounding pharmacy and tell them you think you're having a bad reaction to avicel, and see if they'll make you a new batch with sucrose filler ( perhaps if they won't switch it out, then they'll reduce the price).
The bad reaction to avicel will prevent the LDN from working properly.
Posted 3/18/2014 7:51 PM (GMT 0)

InSoFla said...
LD,

Actually once you are in remission with the LDN, it's a good idea to "pulse it" to keep your immune system guessing.

The way I do it is twice a month, I take a 4 night hiatus ( each time) and skip the LDN for those 4 nights, and then resume it on 5th night.

This is a good way to keep you immune system on its toes, and to ensure the LDN will work for YEARS to come.

P.S. Funny thing, whenever I write LD, my brain thinks of Larry David ( of Seinfeld and Curb Your Enthusiasm - absolutely LOVED those shows!)

I love curb your enthusiasm! This one is my favorite clip. Very accurate from my personal experience haha.

To stay on topic, InSoFla offers very good advice on LDN. I know a few people who pulse it as well. It has something to do with getting endorphin levels back to baseline so that the body induces a negative feedback response and maintains homeostasis. Unlike other medications, I don't believe there are any documented withdrawal symptoms of naltrexone @ very low doses (~4.5 mg). It can be discontinued and restarted again with ease.

LD - I did take it for UC, but I'm doing okay without it, so I'd rather not add other things to my regimen. It is, however, very nice to have a GI who will openly prescribe it, even at very low doses.
Posted 3/18/2014 8:19 PM (GMT 0)
SG,

You are the BEST! I love Curb! It's so good.
Why don't they make great shows like that anymore???
Maybe we should write our own UC related version, what do you say, haha?
Thanks for sharing your favorite clip; I didn't remember it until the end.
Posted 3/18/2014 8:20 PM (GMT 0)
Oh thanks for the info re:pulsing, I hadnt heard that! How long does it usually take to get into remission once you start seeing results? October I will keep you posted, would love to hear about your progress too!
Posted 3/18/2014 8:22 PM (GMT 0)
pulse it = reboot to me. Lol sorry everyone. I almost got it right! Same thing, different name.

When I pulse it, I have to start taking it much earlier, around 9pm because I may not sleep well that night starting it again.
Posted 3/18/2014 8:28 PM (GMT 0)
And Sibby your pulse/reboot is the same 4 days twice/month?
Posted 3/18/2014 8:33 PM (GMT 0)

laughingduck said...
And Sibby your pulse/reboot is the same 4 days twice/month?

Yes. I had to go off of it for eye surgery last November and was off it for a week.
Just went down to 2mg and took it at 9pm, then went back up to 3 in a few days.
I had some nausea when I went back on it, and some sleeping issues. But I may just be very sensitive to medications though.
Posted 3/18/2014 9:28 PM (GMT 0)
I get nausea when. I up my dose too, doesn't last longer than a couple days though.
Posted 3/19/2014 3:03 PM (GMT 0)
InSoFla--

I was just prescribed LDN by my doctor this morning, very happy that he was open to it even though he's never prescribed it before. I spoke with Skip at Skip's Pharmacy about the dosing and he said I should start and stick with 4.5 mg, but I'm a little concerned that it might be too much. Should I start lower? I'm getting the transdermal cream so maybe I could just do a half or 3/4 dose to start? I'm petite and weight about 105, not sure if weight makes a difference.
Posted 3/19/2014 3:27 PM (GMT 0)
Acgirl,
Glad you got the script.
No, I would suggest 4.5mg, however since it is transdermal if need be you can play around with the dosage.

Don't forget to be gluten and dairy free for best results.
Let me know how it goes.
Posted 3/19/2014 4:02 PM (GMT 0)
InSoFla-thanks, I will start with 4.5.

And thank you so much for all of your advice and for posting your protocol. I am in the middle of a bad flare and have been having lots of urgency and sharp stomach pains. I saw your protocol and happened to have L-glutamine in the cabinet so I took it right away, and almost instantly my stomach pains stopped. I have been taking it for three days and now have almost no stomach pains and the urgency has been greatly reduced. I never would have realized something so simple could help ease so much of my pain if I hadn't happened across your post. I'm now going all in--just ordered all of your recommended vitamins, supplements, and protein shakes, going to go gluten and dairy free and hope I get close to the same results as you. After 13 years of dealing with this disease I am open to trying anything!
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