Preparing LDN yourself

[minkeygirl]

Yes one month 4.5 mg!!!!!

That's nuts. Have you thought about using 50 mgs to make your own? Might end up cheaper

 

[minkeygirl]

Dont remember pricing on these

https://www.buyldn.com/our-catalog/ldn-1mg.html

http://www.buylowdosenaltrexone.com/order-now.html

 

[minkeygirl]

@Firefly_ Im going to try your method of preparing my LDN. How long do you let it sit out? Is the water room temp?

I'm thinking I might cut it in two with my pill splitter to have some exposed edges to dissolve.

Please tag me.

 

[minkeygirl]

Had anyone ever tried splitting the dose? Taking a 2nd dose in the afternoon?

 

[Clerner]

I saw a thread somebody posted new places to buy LDN prepared at 4.5mg. Can anybody tell me where you buy it? I got charged $85 in my local pharmacy and I am not willing to pay that much. Time to change supplier. I have prescription.

I paid $60 for a month supply of 4.5 capsules

 

[Clerner]

ad anyone ever tried splitting the dose? Taking a 2nd dose in the afternoon?

I want to try that too. I am only up to 2 mg, but wow did I feel sleepy and drugged. It would be great to split into 2 doses a day if it works.

 

[Firefly_]

@minkeygirl i want to say it doesn't take much more than an hour or 2 for a whole pill and yes I use room temp water.

 

[minkeygirl]

Thanks @Firefly_ I think I have enough left for a few days, then I'll do the dissolve stuff. I decided to ignore the "no more than 30 days rule" and just use up what I have. I'm not sure how many days I've had it, too lazy to look but it still tastes like crap so I'm saying it still works. Lol.

What generic do you have? I think mine is malinkrodt? A white coated tablet looking thing.

 

[Firefly_]

Thanks @Firefly_ I think I have enough left for a few days, then I'll do the dissolve stuff. I decided to ignore the "no more than 30 days rule" and just use up what I have. I'm not sure how many days I've had it, too lazy to look but it still tastes like crap so I'm saying it still works. Lol.

What generic do you have? I think mine is malinkrodt? A white coated tablet looking thing.

My pill bottle just says Naltrexone 50 mg. and my insurance picks up the whole tab so they must be pretty cheap.

 

[minkeygirl]

My doc will only give me 6 at a time. It costs me about $2. My bottle has the name of the company who makes the generic. Still way cheaper than compounding.

 

[Sushi]

My doc will only give me 6 at a time.

I've got a whole bottle too = 30 tabs. The generic company is Mallinckrodt. Insurance pays most of it.

 

[minkeygirl]

For some reason she won't rx me 30.

 

[minkeygirl]

@Firefly_ I did it! Worked great. I looked at 2 1/2 hours and it was done! Thanks for the suggestion.

 

[PatJ]

I think finding the time to take it is really important. Nothing scientific behind this, just experience toying around.

Timing is important for me as well. If I take it at 10pm then I can't sleep after midnight. 11pm is better, but taking it at midnight is the best I've found so far to enable decent sleep. I've also found that more than 3mg makes certain symptoms worse, especially light sensitivity and brain fog.

 

[minkeygirl]

@PatJ I also notice I don't get the same results every day, even when I take it at the same time. I knew within an hour this morning. I had to drag myself out of bed and the pain started almost immediately. It helps make PEM not so miserable

It's also interesting to know about your higher dose causing problems. That more exacerbates some things. How long have you been on it? What do you think your target dose is? I've heard people say after a few months all the benefits faded and they were back to pre-LDN misery. And stopping and starting did not help.

I tried a small 2nd dose at 1 yesterday afternoon since I start to crash around 5-6 pm. All of the sudden at 8 pm I realized the pain had not kicked in yet and I was not struggling to keep my eyes open. I'll try that again later

LDN is certainly something you have to toy with.

 

[PatJ]

@minkeygirl
I started in early November and was up to 2.5mg by December 1st, 4.5 by the end of December, then bounced around a little to find that 3mg works best at the moment. Maybe the dose is weight dependent? (I'm approx. 120 lbs, 5'10" male.) The benefits I get from LDN are mainly sleep improvement (most of the time), mood normalizing effects and moderate reduction in light sensitivity. I consider it an essential med for me now. I can wake up at night and actually feel sleepy/groggy, for the first time in a decade. It's amazing.

Maybe other supplements or even foods will cause variable effectiveness with LDN. I know that dairy and gluten are recommended to be avoided:
"In some cases, people do best with LDN when on a gluten & dairy-free diet. Some of us don't completely digest gluten & casein. The incompletely digested peptides are natural opiates (glutomorphin, casomorphin) & work against LDN in the same manner that certain meds do."

I'm experimenting with my usual yogurt and sourdough bread (staple foods for me.) For a few weeks when I ate bread I would become exhausted. I seem to be better with it now. And my body doesn't seem to want yogurt in the way it used to.

Some quotes about dose from this interview with Chris Kresser:

One of the disadvantages of LDN is that there’s still not standardized dose, and really the patient and the prescribing physician just kind of have to figure it out through trial and error. From our experience, we’ve seen most people end up around 2.5 mg to 3 mg; 4.5 mg tends to be too much for people. I’ve seen some patients settle on as little as 1.25 mg or 1.5 mg, but anywhere in the 1 mg or 1.25 mg to 4.5 mg range could be the optimal dose for a given person.

And the dose can fluctuate, depending, of course, on the background level of immune dysregulation. If maybe someone is gluten intolerant and they don’t know it and they’re eating gluten and they’re taking LDN and they need the full 4.5 mg dose because they kind of have their foot on the accelerator and the brake at the same time, but then they take gluten out of their diet and maybe 4.5 mg is unnecessary or even starts causing some side effects, so that’s possible.

A sample of reasons why LDN may be less effective, or ineffective:

3. We have also seen a number of cases where people were not feeling better with LDN and then they get checked for Candida (overgrowth of yeast in your body - many times stemming from use of antibiotics). If they find they have a high concentration of Candida and they go through the process of getting it under control, LDN tends to work much better for them.

7. Doctors running clinical trials have discovered that low vitamin D levels can hinder the effectiveness of LDN.

 

[minkeygirl]

@PatJ Thanks. I'm a creature of habit. I eat the same thing every day, go to sleep the same time. Time everything at the same time. I have no issues with the things you posted from Chris Kresser.

LDN seems to hugely help my inflammation so for me I think this has more to do with how much I did the previous days, if I'm in PEM etc. Nothing else is different and if it was say, a D level issue (which it's not), I would get no benefit at all. Not 3 or 4 great days then a bad day after I do too much.

I can't take it at night at all, but I do seem to be sleeping better. Yes right now I agree it's essential to me because the days that are good far outweigh a few bad ones tossed in.

 

[Firefly_]

@Firefly_ I did it! Worked great. I looked at 2 1/2 hours and it was done! Thanks for the suggestion.

That's great! Np. And my doc only prescribes 10 at a time but hell 30 tabs would take quite awhile to use up so they might expire? I always wonder what my small town pharmacist must think, all the strange meds we've tried...sometimes I just want to tell him "no, I'm not a heroin addict" lmao.

 

[PatJ]

And my doc only prescribes 10 at a time but hell 30 tabs would take quite awhile to use up so they might expire?

I've read elsewhere that the expiration date on one generic is roughly three years.

 

[minkeygirl]

I've read elsewhere that the expiration date on one generic is roughly three years.

Mine has the expiration date on the bottle. It's usually a few years. It also makes a difference that they are stored correctly.