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LDN- how long do you have to stay on it?

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Posted 12/2/2013 3:44 PM (GMT 0)
Ive been reading a lot about LDN and one thing that I havent come across yet is how long you need to stay on it? Do you stop taking it when you achieve remission, or is it something you stay on indefinitely?
Posted 12/2/2013 5:40 PM (GMT 0)
Dr.Bihari, the person who popularized LDN, had his patients on it indefinitely. Once he started seeing real clinical results, he prescribed it to healthy individuals for prophylactic care. I think he was also taking it if I recall correctly.

The only thing you have to do is "pulse" it, meaning take breaks from it occasionally. This is done to keep the immune system guessing. The breaks can range from a couple days to a month. The other tip I can offer is that 4.5 mg may not be the optimal dose - for some it's 3 to 3.5 mg. You have to figure out what works.

InSoFla knows way more about this than I do, so he'll be happy to help. :)

Post Edited (StealthGuardian) : 12/2/2013 10:46:02 AM (GMT-7)

Posted 12/2/2013 9:39 PM (GMT 0)
Since there is no cure for UC then you have to do something continually, forever, for the rest of your life. If it's LDN then it is LDN.
Posted 12/2/2013 11:22 PM (GMT 0)
Yes well I was wondering if it's something to help achieve remission, then replaced with maintenance meds, like we use prednisone for. Does anyone know if it's safety been studied long-term? Will I have a rebound flare if I stop taking it for some reason? Can't seem to find much info on its long term use.
Posted 12/2/2013 11:36 PM (GMT 0)
It only works while you take it - simple. It takes just a little time to get out of the system.
Posted 12/3/2013 12:12 AM (GMT 0)
LDN is safe for long term use.
There are some scientists ( and doctors) who believe that everyone should be on LDN as it is a cancer preventive.

So, even though I am in remission, I continue to take LDN and have no intention of stopping.

The other good thing about LDN, IMO is that since it modulates the immune system, it helps regulate ( in a positive way) many auto-immune diseases such as: UC, MS, Parkingson's, and others as well - lessening their severity, slowing the progression of these diseases, and even arresting the diseases entirely.

Many people who have one auto-immune disease are at higher risk for getting other auto-immune diseases, and therefore IMO it could lower the risk of developing other auto-immune diseases.

As far as I see it, there's no down side.
Posted 12/3/2013 2:10 PM (GMT 0)
I have never taken LDN so obviously I am not an authority on it. But I do have some common sense. Apparently LDN has way fewer side effects than conventional IBD meds, especially the big gun meds. But some people do experience side effects with it.

Big Pharma does not push LDN because it is not a patentable drug but that doesn't mean that LDN is a natural remedy. It is not natural at all. I have no idea about the effects of long term use of LDN. If I wanted to modulate the immune system or enhance my general health then I prefer taking a natural herb such as boswellia or curcumin for long term use. No reservations at all about taking natural probiotics and vitamin D every day.

But I agree though LDN is not natural it probably has far fewer side effects than conventional IBD meds. But I wonder if LDN is necessary to maintain remission. Many of those taking it also follow strict diet modification augmented by supplements. Which happens to be the way I maintain remission without LDN.

I guess the bottom line is if you find that you need LDN to maintain remission then by all means continue with it. It may be safer than conventional meds. Even the safest maintenance mesalamines can cause kidney stones and pancreatitis. But if LDN isn't needed for continued remission then perhaps it may be safer to take a natural herb or supplement rather than pulsing LDN, which is an artificial drug, for the rest of your life.
Posted 12/3/2013 2:37 PM (GMT 0)
Thanks. I guess there just isn't really any long-term studies on it which is unfortunate. I also wonder if it stops working after a while? These are the questions that pop through my mind when I consider a new med. I like research, which there isn't a lot of for LDN. That doesn't mean it doesn't work of course, just means there are no guarantees. Seems like all the pro-LDN stuff online is by people who make money selling it. That being said, there IS valid information that the short term side effects, at least, are minimal even at higher doses, so I may give it a shot anyway! I just wonder about something that effects the pleasure center of our brain, as an opiate antagonist would do, and if this can cause long-term side effects to mood etc.

I was also hoping for valid scientific literature to bring my doc, who I know will be asking the same questions! InSoFla do you have anything solid that says it's safe long-term, or just hearsay? Not doubting you, I just don't think my doc will accept "because someone on a chat board told me so!" As a valid response lol.
Posted 12/3/2013 2:58 PM (GMT 0)
"Since there is no cure for UC then you have to do something continually, forever, for the rest of your life. If it's LDN then it is LDN."



LOL he beat me too it !!!

FOREVER !!!!!!!

Posted 12/3/2013 6:05 PM (GMT 0)
Yes I expect to have to take maintenance meds, just was not sure if LDN was used as a maintenance med or if it just helps induce remission then 5-asa or the likes is the maintenance med. Do people stop taking their other meds when taking LDN, or are they taken together?
Posted 12/3/2013 8:48 PM (GMT 0)
Some on here have gone into remission. And have used it for more than 1-2 years. Other sites have reported the same thing.

It's not natural, or a supplement, it's a drug. So it still does have side effects. All depends on how quickly you go up in dose, I believe.

I don't use supplements, though I should add fiber, and I haven't 'flared' in a year.
Posted 12/3/2013 10:05 PM (GMT 0)
I love how people are talking out of the air here. Both Dr.Bihari and Dr.Berkson reported seeing next to zero side effects with patients in their respective practices. I've also never heard of people having side effects with LDN, other than sleep issues that subside within the first few days of taking it. Again, 4.5 mg is not always the optimal dose, and people start @ 1.5 mg and titrate up to a dose that works. There's an interview with Dr.Bihari that explains why most people don't get side effects with it. The drug gets metabolized quickly and stays in the system for a short while, minimizing any potential toxicity. The toxicity is only seen in heroine addicts taking high doses of it (up to 50 mg).

Post Edited (StealthGuardian) : 12/3/2013 3:43:29 PM (GMT-7)

Posted 12/3/2013 10:52 PM (GMT 0)
I'm simply warning that there may be side effects with some people. I have both had loss of appetite, nausea with upping my dose and sleep issues within the first 2-3 weeks.
The person wanted to know from people who took it. So I gave them the information, you don't have to be arrogant about this. No one comes here for that, they're here for advice.

Post Edited (Sibby) : 12/3/2013 3:55:44 PM (GMT-7)

Posted 12/3/2013 11:09 PM (GMT 0)

Sibby said...
I'm simply warning that there may be side effects with some people. I have both had loss of appetite, nausea with upping my dose and sleep issues within the first 2-3 weeks.
The person wanted to know from people who took it. So I gave them the information, you don't have to be arrogant about this. No one comes here for that, they're here for advice.

My apologies. My comment wasn't intended to offend, but rather to say that everyone has individual tolerances to medicines. Doctors jump patients straight to 4.5 mg only to have them complain about sleep disturbances. People also have issues with the fillers used sometimes, which is why getting it from a pharmacy like Skips is preferable. There is an art to prescribing LDN and most doctors are just unaware of it.

Dr.Burton Berkson starts his patients off @ 1.5 and then has them work their way up to a suitable dose. If you call up Skip's Pharmacy, they'll emphasize the same thing.

I think LDN is preferable to many other treatments, including mesalamines - but only if it's used correctly and appropriately. The Penn State study used adolescents and children as the test subjects and they reported great success. I think that speaks volumes about the safety of the drug.

It's completely harmless in the context of the other treatments that are used here. I don't want people to be unnecessarily harmed by medications that they never needed in the first place. I can't think of a more benign treatment than LDN.
Posted Yesterday 12:00 AM (GMT 0)
Well I'm really not seeing much about it having any long-term side effects, with the exception of liver damage but that occurs at much higher doses. I see my doc tomorrow and will ask her about it. If she says no, guess I will have to go an alternate route. I like that they are comfortable enough to use it on children.

Last question: I continue my Mezavant and other meds while on it right?
Posted Yesterday 12:19 AM (GMT 0)
Yes, you can.
Posted Yesterday 12:26 AM (GMT 0)
Thanks! :)
Posted Yesterday 11:58 AM (GMT 0)
laughingduck,

StealthGuardian is correct about LDN.

You said: Well I'm really not seeing much about it having any long-term side effects, with the exception of liver damage but that occurs at much higher doses.

I think you're confusing giving Naltrexone at 75-150mg for addiction vs. Low Dose Naltrexone (hence LDN) at doses of 1.5mg to 4.5mg. The first has side effects. The latter, LDN, has virtually no side effects, and certainly NOT liver damage.

LDN has even been used for pancreatic and liver cancer.

There are people who have been on it for Years, without any problems or side effects.
Posted Yesterday 2:09 PM (GMT 0)
It seems to me out of all the people who I have seen on this site who tried LDN, very few actually saw any results worth staying on it. Of course, like everything else, some have had benefit. It does seem relatively side effect free, especially when compared to just about every other UC med, so it is worth a shot for those who wish to give it a try.
Posted Yesterday 4:20 PM (GMT 0)

garylouisville said...
It seems to me out of all the people who I have seen on this site who tried LDN, very few actually saw any results worth staying on it. Of course, like everything else, some have had benefit. It does seem relatively side effect free, especially when compared to just about every other UC med, so it is worth a shot for those who wish to give it a try.

Yes the recent poll someone posted isn't looking promising!
Posted Yesterday 7:06 PM (GMT 0)

StealthGuardian said...
Dr.Bihari, the person who popularized LDN, had his patients on it indefinitely. Once he started seeing real clinical results, he prescribed it to healthy individuals for prophylactic care. I think he was also taking it if I recall correctly.

My earlier post makes it perfectly clear that I believe LDN might be preferable to conventional meds because it seems to have fewer side effects. But that is only if you find LDN effective in the first place. I have seen some research in PubMed that it has been somewhat effective for Crohn's, but nothing for ulcerative colitis.

IMO those who are healthy in the first place should think twice before taking it. There are no clinical studies on the long term effects of LDN for the same reason why the drug companies are reluctant to perform clinical trials on LDN's effectiveness in the first place: it is not a patentable drug.

LDN is not natural at all. Recommending an artificially synthesized drug with unknown long term side effects for everyday general health seems to me similar to some doctors who are now recommending statins for everyday general health for everybody. Some have voiced even putting statins in the water supply. But at least statins were originally derived from natural red yeast rice. Where did LDN come from?
Posted Today 12:57 AM (GMT 0)
Regarding the poll on LDN, what you aren't factoring in is that most people who are in remission from LDN are no longer posting on the forums. So the results are skewed.

And I can tell you that there have been lots of folks helped and put in remission from LDN.

I choose to do so otherwise, because I want to help as many people as possible.
Posted Today 2:10 AM (GMT 0)

BabeintheWoods said...

StealthGuardian said...
Dr.Bihari, the person who popularized LDN, had his patients on it indefinitely. Once he started seeing real clinical results, he prescribed it to healthy individuals for prophylactic care. I think he was also taking it if I recall correctly.

My earlier post makes it perfectly clear that I believe LDN might be preferable to conventional meds because it seems to have fewer side effects. But that is only if you find LDN effective in the first place. I have seen some research in PubMed that it has been somewhat effective for Crohn's, but nothing for ulcerative colitis.

IMO those who are healthy in the first place should think twice before taking it. There are no clinical studies on the long term effects of LDN for the same reason why the drug companies are reluctant to perform clinical trials on LDN's effectiveness in the first place: it is not a patentable drug.

LDN is not natural at all. Recommending an artificially synthesized drug with unknown long term side effects for everyday general health seems to me similar to some doctors who are now recommending statins for everyday general health for everybody. Some have voiced even putting statins in the water supply. But at least statins were originally derived from natural red yeast rice. Where did LDN come from?

1) I agree - I'd never recommend any medicines for prophylactic reasons because lifestyle interventions are always more effective. Obviously, Dr.Bihari felt otherwise based on what he saw in his practice. The research is pointing to the Mediterranean diet as the best way to prevent/treat heart disease.

2) You are comparing statins to LDN. One is a known poison that disrupts hundreds of crucial mechanisms in the body, including coq10 and vitamin D synthesis, while the other is a benign substance that increases endorphin levels in the body. Both LDN and statin drugs have been around for two decades now. Guess which one has the most surfacing studies on adverse reactions.

3) Like I said, LDN has to be used appropriately for the benefits. This means using an appropriate dose and taking occasional breaks from it. There are no long term issues with doing it this way.
Posted 12/6/2013 4:51 PM (GMT 0)

StealthGuardian said...
ou are comparing statins to LDN. One is a known poison that disrupts hundreds of crucial mechanisms in the body, including coq10 and vitamin D synthesis, while the other is a benign substance that increases endorphin levels in the body. Both LDN and statin drugs have been around for two decades now. Guess which one has the most surfacing studies on adverse reactions.

There are no long term issues with doing it this way.

Dr Stealth,

What makes you so sure that LDN is so benign and has no long term side effects? Because Dr. Bahari's patients didn't have problems? Where are the examples of healthy individuals taking LDN long term without incident?

Statins are the most popular prescriptions drugs in history with millions taking them for over 25 years. Of course the downside will show up with that much use. Those side effects are why I will never take them unless I have no other choice.

But at least statins were originally derived from natural sources such as red yeast rice. Even mesalamines are based on Salicylic acid (from Latin salix, willow tree).

Naltrexone is completely synthetic, there are no analogs for it in nature. The reason why I suspect it might have long term consequences, no matter how careful you are with it, is because I believe it is too good to be true for an artificial drug not to have a downside. Just because LDN isn't patentable doesn't mean that it is the same as taking a natural herb such as curcumin or boswellia.

I am not saying that LDN does have long term side effects. I am just saying that I don't want to be one of the pioneers to find out.
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