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30 day vs 90 day LDN

Do you get your LDN compounded every 30 days or 90 days? I'm wondering what's recommended and how long it "lasts".

Thanks!
 

Kev

Senior Member
I found, through trial and error, that the compound loses it's ooomph with time. I fought with compounding pharmacies back in the early days.. because the suggested shelf life of the 'factory' pills (50mg) is longer. I think (no proof, just gut feeling) that exposure to air, sunlight, etc., of the powder when being compounded to the custom lower dose has a downside in shelf life. I noticed that, getting close to the 3 month mark, pills lost some of their effect. Anyway, apparently others on the compound reported similar issues and pharmacies have lowered the 'shelf' life to 6 months. I personally feel that is still way too high. I only use pills of 90 - 100 days in age. I have heard the places like Skips only compounds in 30 day batches.. so they are .. errring isn't the right phrase.. they are going with a very conservative age process (which I personally think is a very good thing). The problem is.. custom compounding.. the standard equipment used makes pills in 100 pill batches. (or so I've been told by 3 pharmacies). What do they do with the 'leftovers' when doctors typically prescribe in 30 pill increments (usually 90 is the standard). It would simplify things if doctors prescribed 100 pills at a time. Then you would remove the leftovers, and the pills would be fresh enough to still be viable. That is my layman's take on the situation. I doubt if you will find a lot of places like Skips that go the extra step. If you aren't dealing with them, just a typical compounding pharmacy that focuses on profit margins, overhead, etc., then convince your doctor to break with tradition.. practice.. whatever.. and give you a script for 100 days. no leftovers, and you shouldn't run into any issues with pills within that age frame. The problem should go away once someone starts mass producing the pills in 4.5mg (or 1.5mg) factory doses.

Again, I'm not a doctor, nor a pharmacist. Not medically qualified in anyway to offer this opinion. But, it has been my experience over the past 5 1/2 years that pills past 100 days really don't seem to have any effect. Pills within 90 - 100 days seem to be fine. And, pharmacies don't toss their leftovers.. someone ends up getting them, so if your doctor is co-operative, request 100 day prescriptions and break the leftover cycle, OK?
 
Thanks! We actually use Skips and my son gets a 90 day supply but I also wonder if they lose potency as they age even during the 90 days.
 

Kev

Senior Member
I have never had any issues with pills in that age range. The one thing I've always tried to do is be totally consistent with my taking the pills.. same time every nite, and same bed time. I've read on here that it is essential the pills work with the proper sleep cycle to be effective. To some, that may sound more like superstition than science, but since it has always worked (for me) I'm a superstitious enough not to rock my boat, as it were.

If you are sourcing them from Skips, then my guess is that you have absolutely nothing to worry about regarding their compounding or their freshness. If there are any issues I would 'guess' there are other factors at play. I found that anything that over taxes my immune system.. colds, flu, that sort of thing.. can result in an overall downturn in my health.. but usually a very brief hiccup. Aside from that.. emotional stresses that used to cause me to flare.. seemingly have no effect on me while I'm taking my LDN nightly.

Now, keep in mind I get my rest, I take vitamins and supplements, I try to eat sensibly. A pill is just a piece of the puzzle. I tend to think of my disease as being dormant, just hibernating. I don't do anything to rouse the beast just because my LDN is working. You can't play fast and loose with this disease. Sometimes the young don't heed warnings of that kind. Or, maybe, their young hormones won't let them. Or it may be hormones are the culprits behind any physical issues. This disease seems to thrive on any major changes in hormonal activity. Puberty, childbirth, menopause, middle age crazy, etc..
 
I know this is an old topic, but I wanted to chime-in and see if anyone had additional comments...

I've been on LDN for just over 3 months, along with Uceris (started at the same time). I've had Crohn's for over a decade now, and other than surgery, am just about out of options (which is why my gastro agreed to a trial of LDN...well, that and I'm a total pain in the butt patient and he's given-up on arguing with me). My LDN is compounded by the hospital pharmacy (I'm the second CD patient they've treated, and they treat a lot of MS patients). Based on expiration dates, I believe they go with a 6-month "lifespan."

When I started Uceris/LDN, I responded very well. Was still doing well when I quit Uceris (2 month course, and I tapered the Uceris for 2 weeks (every other day dosing)). Unfortunately, I started to feel rather awful about 12 days after quitting Uceris (though, in a change from the usual, I did better in the mornings and worse at night, which I attributed to the LDN having an effect, just not enough of one). I'm back on Uceris...

I've been back on Uceris for two weeks. Was doing okay, but nowhere near as well as when I first started both drugs. BUT. I got a refill of my LDN last week. This is a new batch, freshly compounded (my previous bottle had an expiration date of 10/26/13, the new bottle is 6 months from two days before it was filled). Two doses in, and I'm back to doing very, very well...huh.

Reading what I read about Skip's, I'm seriously considering asking my gastro to send my script there from here on out in order to make sure I get "fresh" medication. Thoughts?

Also, thank you to everyone on this site - it helped to convince me to give LDN a try (I'm still amazed that my gastro agreed to it, to be honest).
 

Kev

Senior Member
I have no medical training... but from my own personal experience, I would advise against using pills compounded more than 100 days old. If you can get prescriptions based on fresh batches (Skips seems to be the only pharmacy adopting this practice) you should have no issues. But, simply refilling every 30 days isn't going to resolve this issue. Pharrmacies (Skips excluded) make in batches of 100 pills... and stockpile what they don't immediately sell. So, you can go to a typical drug store with a prescription for 30 pills... and walk out with 30 pills made 5 months ago. If you aren't dealing with a pharmacy that provides 'fresh' pills... your results can be pretty.... well, hit or miss at the best. Compounded LDN loses its ooomph pretty quick. A solution you might want to consider is... request a prescription for 100 pills. Ask your pharmacy to compound a 100 pill batch fresh for you. This 'should' mean no pill you take is more than 100 days old at the worst. If you can get the doctor to do this, and the pharmacy to agree to it, then it should solve the issue. Don't believe this is a real issue??? Take some old pills and mix them randomnly in with a fresh supply. Your body will tell you when you've taken an old one. Regretably, pharmacies refuse to listen to anecdotal info from us mere patients.
 
Thanks, Kev.

My gastro and I have a pretty good relationship (I have found that after the initial battle of wills, doctors ultimately find me charming), so if the hospital pharmacy won't comply, I can probably get him to switch my script to Skip's. The difference in how I'm feeling between last week and now is striking (and I'm still improving). I'm convinced that you're right.
 
Reviving a zombie thread...

So, I got my gastro to send a script to Skip's (I appreciate that they write the batch date on their labels). I had to re-live the neuro side effects, so I think that their stuff is a bit more potent than the LDN compounded by the hospital pharmacy. Skip's is cheaper, too, so win-win. No problems since I've switched - if I have a bad day, it's almost always linked to stress, and a bad day now is better than my best days before starting LDN.
 
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