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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Getting ready to start LDN, few questions


07-15-2013, 10:31 AM   #1
nogutsnoglory
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Getting ready to start LDN, few questions

After much hesitation I think I want to start LDN in addition to my current medications.

When you order do you get a 30, 60 or 90 day supply? I know you want it to be fresh so I'm not sure. Do you keep it in the fridge?

I am a little nervous because I am on Percocet and naltrexone is used for drug addicts. I'm not an addict but have been on this painkiller for weeks, will that be an issue?

Will LDN cause a problem with my antidepressant Lexapro? I would be taking both at night.
07-15-2013, 11:31 AM   #2
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I took a look on my ldn pill bottle and it says do not take with narcotic medicines, as far 30,60 or 90 day supply I get 6 months at a time for 45.00. Not to bad at all.The best thing you can do is read any info you can get your hands on.
07-15-2013, 12:24 PM   #3
nogutsnoglory
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I can't stop my pain killers now. I might need to wait to be able to start LDN than.
07-15-2013, 06:23 PM   #4
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Well, I can tell you, from my personal experience, that I don't take any compounded LDN pills more than 3 months old. That is just my personal experience. Originally, all of the pharmacies that compounded it here would claim it had a shelf life of about one year. But now they are expressly stating on their bottles not to use anything older than six months. I've heard (anecdotally) that Skips (perhaps the most renown pharmacy for compounding LDN) only offers 30 day old pills. And who would know better than they?

Opiate based pain medication can be an issue... Naltrexone is designed/formulated for the treating of alcohol and opiate dependancy. I don't know to what extent the low dose of Naltrexone (4.5mg) used for IBD would affect your pain medications. The dose for treating opiate addiction is 50mg pills in multi pill combinations.. typically about 150mg a day... tho I read somewhere it could go as high as 300mg (I believe that was just in tests). Your pain meds shouldn't affect whether LDN treats your Crohns, but LDN may affect how well your pain meds work.. LDN is taken at bedtime, and usually lasts just 4 - 8 hours (although I don't know if there is any hard data to confirm/deny this).

I also need to point out I'm not a doctor, no training in this field whatsoever. Just a guy who has been using LDN to keep my disease in stasis for over the past 5 years without any issues. And, as for your anti-depressant, I know nothing whatsoever about it. If it is opiate based too, then the same overnight issues may apply. You need to check both.
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07-15-2013, 06:55 PM   #5
nogutsnoglory
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Thanks for your answer Kev. So you think it wouldn't cause harm just maybe reduce the potency or effectiveness of my pain killer? That I can deal with. I can also try not to take pain killers during those hours that LDN works. I am hoping I won't need pain killers much longer but it depends on this vicious abscess.
07-15-2013, 07:02 PM   #6
my little penguin
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Also ask your GI- I dont "think" you can be on a biologic and LDN at the same time.
I could be wrong
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07-16-2013, 08:30 AM   #7
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NGNG, I wish you the best of luck! I would agree with you regarding the Percocet -- you should probably wait. I have some on-hand for emergency situations, but I try to stay away from it in order to stay on the LDN and not cause any issues. (I'm fortunate in that I've only needed to resort to painkillers for a couple days a while back -- here's hoping it stays that way.)

As far as the supply, I get 90 day supplies from Skip's, personally. No need to refrigerate.

Finally, I'll say that if you do end up going on LDN, give it time. It may feel like it's not doing anything, because the effects are so subtle and gradual. I feel better than I have been overall, but it was such a gradual process that I hardly noticed the change. I have to remind myself -- like "oh yeah, at this time a year ago, I felt pretty awful."
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Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

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multivitamin
2000IU vitamin D-3

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gastritis & duodenal ulcers, August 2011
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5cm of narrowing w/ no signs of active inflammation, May 2014
07-16-2013, 06:15 PM   #8
nogutsnoglory
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Thanks much I am going to speak with my GI about whether LDN is safe with pain killers and biologics. I'm really hoping LDN may be my miracle add on.
07-16-2013, 06:23 PM   #9
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Hope it works as well for you NGNG as it has for others here. Have to agree with Jesse it is not quick by any means.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

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currently none due to liver issues
07-18-2013, 11:10 AM   #10
nogutsnoglory
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Ugh just saw a new doc (contemplating switching) but he is totally anti-LDN. He said the science was faulty and isn't there and would not prescribe it. My current doc is willing to prescribe it but doesn't have much faith in it but doesn't seen the harm in trying it either.

I'm a little disappointed because I wanted to switch to this guy but he doesn't seen open to other treatments. I also discussed Stelara and he said it isn't FDA approved. That's true but its in phase 3 and insurance will cover it with data showing a need. It does work for IBD and will be approved soon.
07-18-2013, 07:13 PM   #11
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Hmmm, the science is faulty... yeah, five and a half years faultlessly for me... that is close to 300 weeks... well over 2000 days... rock solid performance with no side effects. Except dreams. Nothing to lose sleep over.. you know? I sleep like a freaking baby.. and have been since my little LDN kicked in and kicked my disease's ass. Totally kicked it.

And speaking of ass... sounds like this new doc is one. Dismissing a medical breakthrough like that with obviously bogus info.. Either he got his facts wrong, or he is shooting from the hip.. making it up as he goes along to nip your interest in LDN in the bud. It is not like he has to play Russian roulette with the potential side effects of other Crohns meds. Shame. Here's the thing.. like, I could understand someone talking that way based on the 1st study... it was small number of patients, and not double blind. But, those issues were addressed in the second study. And there is the pediatric study. And, OK.. if this was one group of researchers... who had something to gain from touting a 'new' drug... I'd approach that with caution. But, there are different studies from various researchers around the world.. working on totally different diseases, and ALL have found that LDN helps... and with mild to no side effects to be concerned over.
Soooooo, according to this doctor... all these 'researchers' got their science wrong, BUT this doctor KNOWS what he is talking about. Just a hunch, but I wouldn't bet my life on this fellow.

OK, down from my soapbox now...
07-18-2013, 07:35 PM   #12
nogutsnoglory
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He is a really good doctor though and well respected and established in medical journals. I'm afraid if I goto him and get LDN elsewhere he may see me as difficult and not want to treat me. I'm not sure what to do. I'm weighing many options but I just need to get better already and the current route isn't doing it.
07-19-2013, 04:08 AM   #13
helena101
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NGNG, does the new doctor have any additional treatment in mind for you? Or is he just being negative about trying anything new? If that is the case, then stay with your old doctor, and give the LDN a try.... You are very well informed, so it goes without saying that you should play a role in deciding the course of your treatment.
07-19-2013, 07:17 AM   #14
nogutsnoglory
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I am wondering if I can just hide it from them for a while and see both doctors? He is negative about anything not FDA approved for Crohn's. I think we have limited options in the IBD med world and need to be open minded.
07-19-2013, 09:22 AM   #15
helena101
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Do you need to hide it from the old doctor too? I always feel more comfortable if at least one doctor knows what I'm doing and is at least reasonably on board with it, so that I have someone to go to with questions/concerns/problems...
Is it an option to stick with the old doctor for 3-6 months until you see how the LDN goes? If things seem to improve by then, then you don't need to change anything. If you aren't seeing any progress with the LDN you could change doctors then. I guess I'm not clear as to why you should go to the new specialist now if you are not prepared to follow his advice at the moment. Or is it that he does have good suggestions for now that you are willing to try, and you just want to add LDN to the mix?
07-19-2013, 09:25 AM   #16
helena101
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Ah, I probably misread, and you mean to hide the fact that you are seeing both docs? And not hide the LDN? Sorry... In which case I don't see why not, other than cost.
07-19-2013, 09:27 AM   #17
nogutsnoglory
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I want to follow his advice but also add LDN to the mix. I could probably see both for a while but can only pull it off so long. One insurance might not like that and also when it comes to the annual colonoscopy how do I explain I don't want one when the other doctor performed it. It could get a little tricky.
07-19-2013, 10:43 AM   #18
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You should know in 3-4 months if the LDN is going to work for you or not so I guess it depends on how often you see your GI. You could probably see both for that amount of time and call it a 2nd opinion
07-23-2013, 05:13 PM   #19
nogutsnoglory
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One thing I read on an LDN website that shocked me was that I cannot use Imodium while on LDN. Imodium is an opiate? That scares me because I need Imodium to control my diarrhea. Theoretically I wouldn't need it if LDN fixes that but its a scary gamble.
07-23-2013, 05:19 PM   #20
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What? Jack was just taking imodium for d from c diff, no problems here, controlled the diarrhea and no crohns symptoms
07-23-2013, 06:53 PM   #21
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I never heard of Imodium being an opiate. If it was, wouldn't it be a controlled drug? I HAVE heard that people with Crohns need to be very cautious, judicious, taking Imodium. That applied to everyone. I believe it has to do with the way it interacts with the digestive tract. Occasionally, in small doses, I don't think there is an issue. But for those with Crohns who take it frequently in more than moderate doses, I do believe there is an issue, a big issue. But I've never heard anything regarding it and LDN. So, if you have been using Imodium for extended periods to cope with your Crohns, you need to look into this and get the facts. Regardless of LDN, use of Imodium needs to checked out.
07-23-2013, 07:02 PM   #22
nogutsnoglory
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It took me by surprise but this is on LDN science:

"LDN is not compatible with any opiate-type drugs such as Immodium (loperamide) or Lomotil (lomanate, lonox)" http://www.ldnscience.org/questions-...naltrexone-ldn

Jmrogers I'm hoping I can take LDN and just take pain killers and Imodium during the day when LDN is not absorbing. I'm glad to hear it worked for your son.
07-23-2013, 07:13 PM   #23
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Thanks NGNG you learn something new everyday. Here is what I found one loperamide being an opiate agonist,

Scand J Gastroenterol Suppl. 1987;130:65-6.
Loperamide--an opiate receptor agonist with gastrointestinal motility effects.
Mellstrand T.
Abstract
Loperamide is an opiate agonist, also exerting activity by inhibiting the action of calmodulin. The mode of action in the clinic is probably mainly due to its action on opiate receptors, since the effects of loperamide can be reversed by naloxone. The exclusive action in the gut is explained by the specific distribution of loperamide with extensive distribution to the gut and minimal influence on opiate receptors in CNS. Loperamide is well absorbed after oral administration and extensively metabolized. The pharmacokinetic properties are linear over a wide dose range.
PMID: 2820051 [PubMed - indexed for MEDLINE]
As I said he was on it for a couple of days due to massive diarrhea like every 15 minutes. Everything was just running right through him (sorry if TMI) and GI says he doesn't usually recommend but we needed to slow things down. As it was he nearly sent us over to hospital for IV treatment. He took it for a few days and it definitely worked although he would generally take a dose in the morning and afternoon and seemed fine after that, so never really with his LDN.

I'll have to print this out for his GI, I'm sure he has never heard that.
07-23-2013, 07:15 PM   #24
nogutsnoglory
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I take Immodium daily and you are right Kev its not that great health wise. I only heard of it being problematic as far as causing obstructions if one is stricturing but otherwise haven't heard of any issues with it.
07-24-2013, 04:00 PM   #25
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Well, couple of things.. is an opiate and an opiate agonist interchangeable? Or do these items merely sound the same... as in tuberculosis and para-tuberculosis

Other thing... I heard.. anecdotally only.. that Imodium tends to turn the GI tract of us with IBD to something resembling cement if taken too long, too much. Could be just hokum.
07-24-2013, 04:18 PM   #26
nogutsnoglory
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Well too much Imodium with a stricture could result in a cement like situation causing obstruction but I think if you aren't narrowed that stuff goes through like any food or liquid.
07-25-2013, 04:20 AM   #27
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Hey, the info I heard was sketchy at best... but, from the 'gossip'.. the premise behind it was... it works fasts, removes liquid content from us in areas of the tract where this doesn't naturally occur.. and it conditions the tract to do that repeatedly. Over time the extra work to move more solid material thru areas where it should be higher in fluid content aggravate scarring... Whether there is any scientific basis to any of this I don't know. But I recall a time whenever newbies on here would relate using this product to help control their big 'D' symptoms, all the oldtimers would raise a hue and cry not to. I've never used it... so I've no first hand knowledge or experience to back any of this up.
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