Low Dose Naltrexone questions

[crohnscoulton]

Hey I just got prescribed ldn 4.5 mg. and would like to know a few things about it. First of all, if im not in a flare how long should I expect it to take before it works? My only symptoms are stomach pain (mild), occasional loose stools, and gas. Also, what is the best time of day to take it? If you have had success with it I would love to hear your story and what time of day/dose you take. Im on fish oils,SCD ,vsl#3,vit.D, and l-glutamine if that helps. oh and the reason im doing ldn is I HATE the Scd diet and I want to eat more normal (im a teen and I want to eat the foods I love) thanks for your input!

 

[Kev]

I've been on LDN for nearly 4 1/2 years now (since Nov of 2007). I was flaring out of control when I started, and it took a while to kick in, but once it did.. well, I've been right as rain ever since. I take it at bedtime. Never had any side effects except for some very vivid dreams at the beginning. Sadly, those stopped. I try to eat healthy, but I have been known to slip... yet I never had an issue with anything I've eaten. That's a far cry from where I used to be. Some docs say diet doesn't matter, some docs say it does. As for me, I prefer to look on it like this... the damage this disease has done to my digestive system is irreversible, so why not be kind to what GI tract I've left.

 

[crohnscoulton]

Ok thanks. I was really unsure about when to take it so thanks for clearing that up. Do you take it right at bed or a little before?

 

[LittleChloe]

I'm almost 16 and I've been on ldn since October. I was diagnosed with crohns in September and spent 14 days in the hospital getting it under control. After I was off the prednisone I started ldn and I've been on no other drugs except for some antibiotics for a c diff infection. I was careful with diet for a few months but now I eat what I want except for popcorn. My mom does make me eat very nutritiously though. I take fish oil, probiotics, vit d3, b12 shots, zinc, digestive enzymes, bovine colostrum, and a supplement called zyflamend. I take ldn at night before bed. I had some sleeplessness and dreams I could remember (I usually don't) in the beginning but that's it. I've gained almost 11 pounds. We (my family) believe that ldn has possibly stopped the progression of the crohns so im glad its the drug i did first. I do have occasional symptoms but they are mild and have still been improving. I hope you do good on it too.

 

[Kev]

Hey LittleChloe... Glad to hear you are doing good. I think your Mom's idea about eating a sensible diet is a very good idea. You've seen for yourself what can happen when your GI tract gets out of whack, and you want to avoid it recurring. Doesn't mean you can't slip in a bit of junk food now N then... I do. I just try to stay on track most of the time.

Hi crohnscoulton... Yeah, I take it right before I go to sleep. I started doing it that way in the early days, simply because the dreams it was giving me initially as a side efffect were so great I looked forward to them. Seriously, it was like going on a real vacation while in bed, sound asleep. How's that for a side effect? One you can't wait to happen. Sure beats all the others out there. One thing I think I should mention. LDN may cause you to feel way worse before things turn around and you begin to feel better.
I can't prove that... and I have absolutely no medical training to back up that theory, but that was the way it worked for me. If that should happen to you, my personal advice is to try to tuff it out for 3 months minimum. Give LDN EVERY chance you can to do its stuff. If it hasn't kicked in by then, welllll... you've paid a heavy price with no reward. But if it does kick in, then you are laughing. But, if you try it, and give up early in the experiment, you will never know for sure if it would have eventually worked for you. The benefit of LDN is that, as far as anyone knows, there are no bad side effects to worry about coming at you down the road. I've been on it a long, long time, and I've experienced no ill effects. The risk is... it may take some time to do its magic, and you could get a lot worse than you are right now... with no guarrantee that it will work. That is the catch. That is the risk. But the payoff CAN be huge.

 

[crohnscoulton]

Thanks guys. I really hope I can start eating more foods without flaring soon that would be great. Gonna give that colostrum zyflamend, and digestive enzymes a shot to. If you see this LittleCloe, what brand of enzymes and colostrum do you use? And also does anyone know if lialda would interfere with ldn because my doc wants to put me on it and he knows nothing about ldn. Thanks.

 

[LittleChloe]

Symbiotics colostrum plus and Q-zyme ultra ultimate digestive enzyme. Get them at vitacost.com- best deal.

 

[KTA]

Kev...I didn't want to ask you directly so I'm throwing this out there for everyone. Hello to you all.

Well....my adult son has been on LDN for almost ten months. He feels great, but has lost over 20 pounds. He also has some blood in his bowel movements, which he never had before and goes a little more then his usual. He has a routine doc appt. in June and his routine colonoscopy right after. I think his doctor is going to be upset because he lost more weight since his last appt. in Feb. 2012. His primary doc told him his weight is in normal range for his height, which is only 5'5 but I have never seen him this thin since he was diagnosed 15 years ago. The primary gave him a script to get blood work and his hemoglobins are down slightly, his sed rate is 27 and CRP is 1.5. These numbers have only changed SLIGHTLY from his last labs in February and his GI doc wasn't that upset over them. I am worried he is having a flare up. Can anyone tell me if you can still flare even if you are on LDN? Does this mean LDN isn't working for him? He is wondering if the LDN is only masking the symptoms of the crohns since he feels so good. I guess the colonoscopy will be the only way to tell for sure. Needless to say, I am very discouraged.

 

[Kev]

Well, the things I have personally experienced go something like this. If other illnesses that even un-related to Crohns (i.e. flu, cold, what have you) knock the stuffing out of you, then the Crohns symptoms can become more noticeable... sort of akin to a very minor flare. I've had this happen, and then... after whatever illness has upset the apple cart dies down, the immune system/LDN combo kick in and those symptoms calm down and go away. I have had two spectacular bouts with the flu over the past 4 1/2 years, and I noticed that, while under the weather, my Crohns symptoms did act up mildly (as in stool wasn't as well formed, or the odd extra trip to the bathroom... and this lasted for 3 - 5 days). Then, I'd fight off the bug, and within days everything was back to normal. This is why I don't consider myself in remission... it is the LDN keeping my IBD in check, and everything is OK as long as other things don't overwhelm my system. To my way of thinking, if I were truly in remission, then I could toss the LDN aside and be right as rain. My experiences have lead me to firmly believe this would not be the case if ever I was foolish enough to try it. That is item 1. The next item I would raise is how 'fresh' is your LDN. At first, the pharmacy swore that compounded pills had a shelf life of a year.... I think they just took that figure from the shelf life of the 50 mg pills that come from a factory... coated in an air tight shell of whatever chemical they use to bind the powder into pills. But, I think bulk powder, poured into half capsules and then mated to the other half aren't air tight, and I (this is just my personal belief, with nothing concrete to back it up except the experiences I've had with my pills) think that the 'custom' compounded capsules begin to lose their 'umph' in as little as 90 days tops. The pharmacy now state (right on the pill bottle label) to discard any pills older than 6 months. Personally, I strive to avoid using pills older than 90 days. I find that, slowly, little by little, my overall wellness takes a little backslide approaching the 90 day limit. Is this psycho-somatic? Maybe, but I don't think so. I've experimented a little to determine if my mind was playing tricks on me. First, when I find those last week to 10 day supply that's left starts to lose its power, I've refilled, and the fresh ones turn things around immediately. I'd save those 7 - 10 suspect pills and use them only on the weekends, and sure enough, things would slide slightly. But, that could be strictly a mind over matter thing going on. So, then I started playing like LDN roulette. I'd stick those remaining pills in with my fresh ones, mix them around, and still notice the odd time or two where things weren't 100%. So, based on my experiences only, I now will only take orders of 90 pills at a time. I insist my doctor writes the prescription in that fashion, and I insist the pharmacy fills it with fresh, and NEVER stockpiled pills. It seems to do the trick. Final point. Rest, diet, exercise, prebiotics, probiotics, supplements and vitamins, ALL of these (I believe) play a part in my continued success. If anyone thinks that this pill will miraculously dispell Crohns without every bit of assistance one can give, then they are taking a very foolhardly approach with a disease that we ALL know is not to be toyed with. If someone treats Crohns as if... well, all I HAVE to do is take a pill at bedtime and forget I have this disease.. then I truly believe they are in for a very rude awakening. The way I see it, Crohns and I are in a battle to the death, and I don't intend for it to be Crohns that wins this fight. OK, that's my silly take on all this.

 

[LittleChloe]

Interestingly I've had the same exact question as you KTA. Overall I believe that LDN is doing a great job of treating my daughter. However that doesn't mean that we have no problems at all. I at one time had the hope that LDN would "miraculously dispell Crohns" but alas it is not a cure. When my other two kids get a cold, strangely enough Chloe won't catch the cold but she will flare with her crohns. A flare for her is mild abdominal pain, low grade fever, fatigue and maybe diahrrea. We also notice that she has little flares when she gets her monthly period and even if she has a long weekend when she is up late a couple nights in a row. She will even have belly pain if she's worried about an upcoming exam. We've also had a hard time overcoming iron deficiency and she's still slightly anemic. These are things we are working on to overcome. Even so she is so much better than she was. With all the things we are doing to keep Chloe well and still she has some tough times. I can't even begin to imagine what the disease would be doing to her without LDN and the other supplements. We are now looking into purcharsing a vitamix machine so we can start making nutritious smoothies and refining the diet issue a little more. KTA please let us know on this thread the results of your sons colonoscopy. Chloe has been on LDN for 6 months and I'd love to see how someone else is doing that started around the same time. I don't know what else your son does but maybe he would benefit from some calorie dense smoothies for his weight. Kev, all your input has been invaluable. Thank you for all your informative posts. I'm going to start paying attentiont to the fresh prescription factor. Chloe's LDN is liquid and is made 30 days at a time and kept refrigerated. Still, I'm going to see if she feels better at the beginning of the bottle than she does at the end.

 

[KTA]

Thank you so much for getting back to me, Kev and LittleChloe. Kev…I know I have said “thank you” a hundred times , but I feel the same way as LittleChloe. The information you provide to all of us is invaluable and we all appreciate it. I know a lot of us look to you for information because of your long term use and experiences with LDN. I feel much better hearing your comments, suggestions, etc.

Please forgive me everyone if I start rambling here…but I guess I WAS expecting LDN to be the miraculous “cure all” for Crohns. Reading your post, Kev, I don’t think my son has gone into a “true” remission since his last flare in June 2011. His blood work has basically stayed the same since he started the LDN, but the weight loss is really my main concern. He is now starting to lose muscle mass. I haven’t read any posts with people using LDN with such a huge weight loss. When he first got diagnosed 15 years ago, his only symptoms were a fistula and severe weight loss. His blood tests were horrible. He would always run a fever for no reason at all when he was a child/teen. The loose stools started a short time after his diagnosis and he only went a few times a day. This was a kid whose insides looked like dog meat, but he didn’t feel that sick. He actually had the fistula for two years before it was absolutely gone. I have to keep reminding myself that he is still going to have symptoms, like the constant loose bowel movements, etc. even on the LDN. He just seems to go more now and has blood in his stool. Not always, so this could be hemorrhoids or maybe a fissure……I HOPE. His diet….excuse my language, totally sucks, but he did start to drink instant breakfast that is lactose free and 560 calories. He only drinks it maybe once every other day now. At first it didn’t bother him, but one time he drank it and had to use the bathroom all day, so of course he blamed it on that, not the breakfast sandwich he got from Wawa! He hates Ensure. I got him VLS#3 probiotics but he said he isn’t starting it until after he gets his colonoscopy. He has tried probiotics before and didn’t like the way he felt, so he stopped. A person he works with has some sort of bowel problem and suggested VSL and said it really helps. So….I’m hoping maybe that will help my son also. When he has a solid bowel movement it is really a big deal for him/us! And that doesn’t happen much anymore. The last time we got his LDN we got it from a different pharmacy because we thought the old one was using lactose filler in some of the batch since some days he would really need to use the bathroom a lot and feel sick to his stomach. We specifically told the pharmacy no lactose filler. This new pharmacy actually put an expiration date on the bottle of six months, where his last pharmacy didn’t do that. But I agree with you about using pills that are older than 90 days. That is how we order it also. A three month supply. It’s 4.5 mgs and I am now wondering if maybe that is too high a dose for him with all this weight loss. Maybe he should try to cut down to 4.0 or 3.5mgs. My son has been having allergy symptoms for the last several months and he keeps saying it’s a cold. I think its allergies. I first thought he was being exposed to mold living at my husband’s house, but he stayed with me for a few months after that, and continued to lose weight. He also started dating a new woman, more like a sweet, young thing…….(big age difference)…. at the same time he started the LDN, so I was attributing that for some of his weight loss. You know how love can do that to you! I keep asking him maybe it’s the three golden retrievers the GF has that is making him feel like he has a constant cold since he is always at her house….. but…of COURSE he tells me it’s not that!! He is not getting the proper rest either, although he has told me he doesn’t need that much sleep anymore since he started the LDN. SIGH! I feel so bad for him most of the time. He is my only child and I have dealt with him being severely ill on and off for the last 15 years. I keep forgetting how old he is and that I should not be involved so much with his care. This horrible disease is his cross to bear in life. Ever since the MAJOR surgery he had almost 4 years ago and then developing C Diff for two months, I have been keeping tabs on him when I shouldn’t. His GI doc stated that he would have about 15 year’s remission if he got the surgery. The Crohns was back in 11 months! However, I have to remind myself that I am his only “patient advocate” and if it weren’t for me, he would not have found out about LDN. His doc wants to put him on one of the biological drugs and he absolutely refuses! We were even looking into trying helminthic therapy. We gave up on that idea. It’s funny, when he hears of a new person being diagnosed with Crohns in his circle of friends, he tells them about trying LDN. No bad side effects and he feels Great!

You are so right, Kev. This disease is a battle to the death, and my son is a person who will not allow it to win! Good luck to you and LittleChloe and everyone else on the boards Thank you again for the responses. I will keep you posted about the doc appt. and colonoscopy. Katie

 

[LittleChloe]

Katie we will always worry about our children no matter how old they get. He is fortunate to have you on his side.

 

[Kev]

I wouldn't make any changes to the 4.5 mg dosage unless presented with incontrovertible proof there was a problem with it. I also hope that I never gave anyone the impression that I considered LDN a miracle cure for Crohns. I never saw it that way personally. To me, it was more akin to... and this is a crude comparison, but I think it has its points... to me, I consider LDN is to Crohns what insulin is to diabetes. A medicine that slows the progress of the disease, makes life more livable, but certainly not to be confused with an out and out cure. I don't consider myself in remission, but more my disease is held in check. I can't undo the harm, the damage it did to me, but I can proceed to live a pretty good life... even though the disease still resides inside me.
It's there, at microscopic levels mind you, but it is still there. And continues to be there.
A diabetic, insulin notwithstanding, still has to watch diet, still has to rest, still needs to take care of themselves, and be on guard against the complications of their diabetes. I'd say a Crohnie on LDN HAS to do likewise. We aren't cured, we aren't in remission, the disease is just dozing. OK,enough soapbox. Bleeding is a concern, lack of rest is a real concern, essential 'smart' nutrition is a must, getting scoped to see where that blood is stemming from is absolutely essential.... Well, being a parent I know how impossible it can be at times to get grown children to see the necessity to adjust their priorities. It's a bitter pill to swallow... that sometimes... sadly sometimes... children need to learn that firsthand for themselves.

 

[KTA]

Thanks LittleChloe for such a nice comment. And the same goes to you with your daughter and Family! I mention to Kev a while back that I sometimes feel like being a parent is a life sentence….and it is!

Kev….you did NOT give me the wrong impression about LDN. That was my own wishful thinking! I totally agree with your comparison. LDN for Crohns is like insulin for Diabetes. It helps to keep things in check but the patient also has to do their part to get the most benefit. I’m hoping someday my son will understand that he has to be serious about his diet and rest. You’d think he would have learned that in the last 15 years. I was lucky to get through to him…..after years of telling him, that smoking cigars was making his disease worse. He finally stopped after his surgery! My son’s disease is severe and like you and everyone else with Crohns, he isn’t going to be able to correct the damage that has already been done. He isn’t going to grow back the 4 ½ feet of large intestine he had removed 4 years ago. He doesn’t have much left to work with! Although his diet is horrible, I have to give him some credit. He never misses his dose of LDN or other maintenance drugs. Even when he developed the kidney stone back in September when he first started LDN, he insisted to the hospital he needed to take it for his Crohns. They never heard of LDN, but they did allow me to bring it in to him the three nights he had to stay in the hospital. He passed the stone while he was still in the ER, but they kept him hospitalized just to be sure his Crohns wasn’t acting up. They said they saw a little inflammation in his intestines on the CAT scan and that may still be the case with his latest blood work coming back the way it did. For now, he is going to stick to the 4.5 mgs of LDN. By the way, he isn’t as brave as you when it comes to no anesthesia for the colonoscopy, so I guess he should stop the LDN a few days before the test. He understands fully that he can’t have any kind of narcotic when taking this drug. He was vomiting a lot when he went to the hospital with the kidney stone, and when they shot him up with the pain killers, he REALLY got sick! But he said he rather have that than the severe pain from the kidney stone. Another wonderful thing he/people need to be careful of with the Crohns disease! Keeping yourself hydrated!

It kills me to keep my mouth shut to him. I constantly say things about his diet, etc. but it goes in one ear and out the other. He feels great and that is all that matters! Only when he suffers does he start to listen! So, unfortunately, he is one of those people who has to learn everything the hard way!

Take Care, Kev and LittleChloe! And…..Best Wishes to everyone! Katie

 

[Kev]

Whoa! Who said anything about no anesthesia for a scope? Not me. I have always been given loads of anesthesia... my GI is liberal with it. And I HAVE NEVER stopped/skipped a single dose of LDN for a scope. I take it at bedtime, and even with a scope scheduled for 8:00AM the next morning, my understanding is that a 4.5 mg dose of Naltrexone is gone within a few hours... so (and I could be totally mistaken) there should be absolutely no interaction between Naltrexone taken the night before and anesthesia administered the next day. I've never had an issue doing both.... and my GI has expressed no concerns about it. I think this is something that needs to be clarified with your medical team ASAP. Why go through a scope without anesthesia if there isn't a VALID reason? Like, Naltrexone was originally designed to treat folks with alcohol or opiate dependancy. It blocks opiate receptors (my crude understanding of it, that is) so worst case scenario is that if someone were given opiate painkillers, it would still kill the pain but the person wouldn't get the high or rush associated with it. I could be wrong!!!

 

[KTA]

OMG....Kev....I'm so sorry for the misunderstanding! LOL! I thought I read in one of your post from your last colonoscopy, when you let us see the pictures with the scar tissue, etc. that you didn't do any anesthesia! Boy...did I screw that up! Anyway....I still think you are brave! Everyone dealing with this disease is!

I also thought I read that you should stop the LDN before the colonoscopy for a couple of days before. If the anesthesia didn't bother you, then I'm sure my son will be able to take it. He has it in his head that since he got so sick from the pain meds when he had the kidney stone that he would have to stop the LDN for the colonoscopy. Even if he stops for the one night, it may not do him any harm as far as making him flare, etc. Which may be happening anyway at this point!

Thanks for the clarification, Kev, and again....so sorry! Actually....I don't know how anyone would be able to go through that test without anesthesia. I can't imagine the thought of having a sigmoid scope without it!

Take Care!! Katie

 

[Kev]

I've always had anesthesia since starting LDN. Usually, I'm completely out of it, and have no memory of the procedure itself. However, during the one those pictures were from, I was alert.... awake enough to simply shove the resident out of the way so I could look at the photos on the screen while they were taking them. I don't think they will let me be that 'alert' again. I mean, sans anesthetic, I'd never dream of physically grabbing a dr and moving them like they were a rag doll. I think the drug sort of takes the adult out of the brain equation. That may be why they require a 'sitter' be with the patient post procedure. One time, I apparently talked with my Gi for 1/2 hour (I have absolutely no memory of this... or where I dressed... in the locker room or the hall???.. AND then... on the way home.. I apparently insisted on running errands.. again with no memory of any of this). Up until that occured, I thought the sitter rule was going to extremes. After that incident, I was thankful they insisted on a 'sitter'.

 

[Jmrogers4]

Just had a GI appt today for my son, he has been on azathioprine since he was diagnosed in 2010 but will turn 13 next month and his doctor has suggested switching to LDN since the increased risk of t-cell lymphoma in teenage boys on azathioprine. I did not know anything about LDN but after reading through these posts I'm thankful his doctor is researching other medications/therapies and am hopeful this will work as well for him as it has for a lot of you. We have been lucky and have been able to control his CD with minimal flares. Our biggest issue has been lack of growth and being extremely underweight. Hopefully this will get everything completely in remission and allow for normal growth maybe he will even catch up to his peers in size.

 

[KTA]

Hello Everyone:

Just wanted to give an update from by previous post, for those who are interested. My son’s routine Gastro appointment was earlier today. He lost another 10 lbs. since February. So he has lost approximately 26 lbs. since he started LDN over ten months ago. The doctor was concerned about the additional weight loss, but wasn’t real concerned with his numbers from the blood work. He said if he was flaring, his numbers would be a LOT higher than they are as far as Sed. Rate, CRP, etc. And he probably wouldn’t be able to make it to work every day like he does if he was flaring. But he did mention to him to think about Remicade. When we left the doc’s office, my son said to me "NO WAY on the Remicade!" The doc gave him an internal examine to see if he had a hemorrhoid because of the blood in his stool but didn’t see any and said he may have a slight tear further up and there was a little inflammation. I forgot to mention that last week my son got really sick with vomiting and running a fever for about two days. My son thought he may have had food poisoning since he ate a fast food meal for breakfast. This kid really has to learn the hard way about his diet. He still does not GET it! (He is thirty years old but I still refer to him as “kid”). Who knows….it may have been a stomach bug that made him so sick last week since the LDN puts your immunity in a different mode. Anyway…..the doc said he isn’t going to give him a colonoscopy yet….he said my son looks good even with the weight loss, and he didn’t feel or see anything unusual when he examined the rest of his body. Plus….my son feels really good. He felt GREAT until he got sick last week. The doc said the pics from the colonoscopy from a year ago, looked like he was having a flare, but the biopsy came back “unremarkable” so he wasn’t in a hurry to scope him. The doc wants to see him in another month to see how he is. He put him on Flagyl, Cipro and Endocort. My son said he is going to stop the LDN for a little while to see how these other meds work on him if he is having inflammation and then start the LDN again in another month or so. I told him to continue the LDN with these other drugs, but he did a lot of reading and he doesn’t think it will hurt him if he stops for a little while. It’s his call if he wants to stop. If the LDN is causing this weight loss, maybe the Endocort will put some weight back on him. This will be an experiment to see if it is the LDN making him lose all this weight. But he has no intentions on stopping it all together. So….at this point in time, we/he is going to see how this goes in the next month. I will post again later to let you all know how things are going. Thanks for listening, everyone…..and Take Care!

 

[Kev]

I would expect him to worsen physically if he stops the LDN. The reason I 'assume' that is going to be the outcome is the same reason I only use fresh LDN. Once it starts to lose its potency (and here I'm equating 'old' pills to 'no' pills) my symptoms start to resume. It is totally a guess, but that is my guess as to the outcome of his experimental withdrawal of LDN. I've never been on Cipro or Endocort, but I was initially given Flagyl. It didn't do a thing for me... to which my GI (at the time, I no longer see him) responded.. "it was a long shot, but we had to give it a try". When I questioned him as to what he meant by that, he said it had about a 20% success rate. He also added that since it didn't work this time, it was off the table for any future consideration. Sadly, I didn't push him to explain that... I think it may have to do with resistance, but that is a WAG. As for the Endocort, I never went that route, but I have heard very good things about it... which I may have got confused, but I'm sure if I steer you wrong someone will pounce with the 'right' info. Essentially, an Enteric coated steroid that bypasses stomach and disolves in the upper GI tract, thereby delivering steroids to the appropriate area AND foregoing the side effects typically associated with steroids. I don't know how long one can remain on Endocort, but steroids whenever I've taken them made me feel invincable. Problem was, my doctors wouldn't let me remain on them due to potential long term side effects. I don't know if Endocort is different in that same respect. But things like moon face, hot flashes/cold sweats, mood swings, etc., apparently aren't typical as they are in typical steroid use. Only other things I've heard about Endocort is that it targets the small intestine, but isn't usually prescribed for the large. Whether the Enteric coating won't make it that far, or the absorption mechanics for one is different than the other... I dunno. And that may not be accurate info. Final thing I've heard is that it requires medical/drug coverage to afford... about $1400 each month without.

Final thought... I can't fathom how LDN would result in weight loss. It certainly hasn't resulted in anything like that for me... I'd lost about 60 - 70 lbs with my battle with this disease. I've put it all back on, plus a little. Naltrexone blocks receptors in the brain (my laymans understanding of it, that is) resulting in opiate or alcohol addicts to receive less pleasure from indulging... so there goes the high. I don't know if, by some stretch of the imagination... it would also remove pleasure from eating, but it might. I've never heard of it being even considered as an appetite suppressant, but what do I know. So, if your son is losing weight, it may be that he isn't eating enuff, or poor nutrition, maybe enhanced by LDN. That's a long shot, actually QUITE a long shot, but you never know.
But my gut hunch is that he isn't eating either what he should nutritionally or by amount.

 

[KTA]

Hey Kev.....thanks for your response. My son always responds well to antibiotics when he is having a flare. Ever since he got diagnosed in 1997 his Pediatric Gastro doc used them from the get go and they still seem to help. However, with his adult Gastro doc, I don't think he keeps him on them long enough. The doc only gives my son enough for two weeks and I sometimes think he should be on them for at least 21 days. I know the doctors are worried about prescribing too much antibiotics since people are now becoming resistant to them. He was on Flagyl for almost two years when he was first diagnosed because of a fistula that would not heal. But…..is he truly having a flare right now? None of us know for sure at this point. As far as the Endocort, that was one of son’s maintenance drugs for years.....since it was approved. For some reason, it just seemed to stop working for him. Now it comes in generic form. My son really wanted to go on prednisone but the doc won't put him on that until he knows for sure that the Endocort won’t work or until he knows for sure my son is actually having a flare. He/We won’t know that until the colonoscopy. I don’t want my son to stop the LDN while he is taking these other drugs. I don’t think the steroid in the Endocort will interfere too much with the LDN. But….it’s his call! His doctor didn't tell him to stop takig it! I don’t know the mechanisms of how Endocort works, but the doctor explained that most of the steroid goes to the intestine instead of it all going into the bloodstream like prednisone. I’m praying he doesn’t get any worse stopping the LDN and have a full blown flare up. He did feel great being on LDN but he wants to see if this is the reason for all the weight loss. This whole thing is so upsetting to me. Some people mentioned maybe it’s because he has been on some sort of steroid, whether it was Endocort or Prednisone, for the last several years, and now he has no steroids at all in his system since starting the LDN. He stopped all his maintenance drugs but the Canasa and the Aluzfidine when he started LDN. And we know his diet is terrible but that has always been the case, so I can’t figure out why this is happening. The doc yesterday asked if he had thyroid studies done with this recent blood work (he didn’t see the results in the paperwork) and of course he did get his TSH checked and it was in normal range so that cancels out an overactive thyroid. I know it’s not my body, but I think I will lose all hope if LDN isn’t helping him.

 

[kimmidwife]

Little Chloe,
I wanted to let you know my daughter started the LDN around 5 months ago and is also doing well on it. we are very happy with it.

 

[Kev]

Hey KTA... I thought you said he was feeling great... sounds like the LDN is working fine.
The weight loss.... I don't think that can be pinned on LDN

 

[KTA]

Hey Kev....and hello everyone!

I don't want to believe all my son's weight loss is due to LDN. He did feel wonderful on it. I'm thinking maybe the stress with this new young GF (he will never admit that!) and maybe not getting fully over the flare he had last spring/summer may be the reason. His numbers on his blood work never went into a normal mode from last summer. His sed rate at that time was 23, was 23 in February and is now 27. His sed rate does go into a normal mode when he is well. Those numbers aren't too bad, but I guess it does show that there is some inflammation in the body / infection since the other blood results were slightly off also. He started the LDN at the same time he hooked up with the GF so who knows! And his GI doc didn't feel it was necessary for him to stop the LDN but my son wanted to stop taking it....just to see if maybe that was the reason for the weight loss.

He stopped the LDN over a week ago and is on the two antibiotics and Endocort, plus his other meds, canasa and azulfidine. He said he feels great. Doesn't feel weird being off the LDN and has actually had a solid bowel movement. He hasn't had one of those in over 8 years! It’s funny that something like that is a big deal for people with this terrible disease. He has every intention of going back on the LDN after he is done with the Endocort. That is definitely his maintenance drug for now. I want to find out if people can take LDN with Endocort? That may be a good combination for him. When he stopped the LDN and started these other drugs, he said his appetite did not change at all. But in the last couple of days, he has been eating a lot more. I just hope he can gain a little weight before he goes back on the LDN. If he doesn't, then we will know it wasn't the LDN after all. Maybe a combination of LDN along with the other stuff I mentioned above, the flare and the stress is causing it. I just wish and pray that when he finally gets his colonoscopy that it shows his insides looking great. If that is the case, then we will know that the LDN was actually helping him and not just masking the symptoms. I can't understand how a person can feel so wonderful if the drug isn't actually helping them.

 

[Kev]

I hope it works out for the best. I have no medical training, but from what I've heard or read, I don't think there is any way the LDN could simply mask the symptoms of Crohns. It just doesn't seem physically possible for a neurological drug to do that. But what do I know. Now, I've never been on Endocort, but I have been on Pred.. if I'd known about Endo, I might have opted for that route to avoid the side effects of steroids. No matter. I do recall that Pred made me feel like superman, and it increased my appetite immensely. I don't know whether it was because I felt so much better, or if it actually does something to your metabolism, hunger, cravings, whatever. I can also tell you that I felt ... like I said.. like superman.. on steroids. I've never felt like that on LDN. It made me feel better, but not invincible... you know what I mean? Steroids not only made my Crohns symptoms go away, they made me feel 10, 20 years younger. Whether that is a side effect of just Pred, or also occurs in Endocort which is coated so that the side effects are lessened, I dunno. I also don't know what the long term side effects of Endocort may be... if there are any at all. I do know about Pred. Those are bad enough that doctors won't keep you on it, no matter how successful it works or how good it makes you feel.

 

[KTA]

HI Kev.....yes...the Prednisone will make you feel like superman! By son thinks he can take on the world when he's on it! He eats like a pig and doesn't sleep much either. That is all part of the side effects. It will also make you have horrible mood swings. It seems more pronounced with females taking it, having emotional outburst, crying, etc. My son just gets nasty and won't take crap from anyone. He ALWAYS gains weight when he is on it. Gets the moon face, etc. My son has so many stretch marks all over his stomach and body from the weight gain and loss from being on Prednisone over the years..….and I mean bad ones, like a tiger came up to him and swiped him with their claws! Deep, long and red! After he had his surgery…..we couldn’t tell which mark was the surgery scar and which one was a stretch mark! . When people give him crap about picking up something really heavy at work, he pulls up his shirt and lets them see his stomach….and he always gets the same reaction. OMG….never mind….don’t pick it up! That is why I think he lost so much weight being on LDN and being off all kind of steroids….whether Prednisone or Endocort. I think he was on Prednisone almost a whole year before he had his surgery....and when he wasn’t taking the Pred anymore, he was on Endocort for maintenance. Then gets re-diagnosed 11 months after the surgery and had to go back on Prednisone because he was having a bad flare. Then back to Endocort ! SIGH! My son doesn’t seem to have any side effects from the Endocort. But there is a touch of steroid in them so again that would keep weight on him. Having no steroid at all in his system after being on them for almost 8 years may really be the reason he loss so much weight on LDN. I know I’ve mentioned that a million times. LDN really changed his whole body. He actually had a few people asking him if he was smoking crack! I saw him last night and again mentioned about using the LDN with Endocort. He told me to stop getting upset that he wasn’t taking the LDN. He is not giving up on it and is only stopping for a short while. He actually said he didn’t want it to stop working for him that is why he wants to give it a break while he is on these other meds….. on top of seeing if the LDN was causing the weight loss. I told him you (Kev) have been on LDN for 4 years and it’s still working for you so don’t put the thought in your head that it’s going to stop working…… like every other drug he has taken for this disease. LDN doesn’t work the same way as all the other drugs for Crohns. It’s a whole different approach for treating this disease. Thank GOD!

 

[JoyceF]

Hi to all that are posting here. I'm so sorry that I don't have the time to read everything that has been posted but just felt the need to post a few comments to all those that are using LDN. Whenever I hear someone say that they wonder about the LDN capsules and if they are working, my first question is where did you get them? I always tell people to please be careful in using a compounder that is familiar with this application and realizes just what type of filler (fast release). Also, some are using pure naltrexone whereas some may just be crushing the 50mg pills? There are many that are quite familiar with how to compound this and most should be able to once they have the facts. Just don't assume. I have been using LDN for MS since 2002 so it is now 10 years.
Someone asked about the time to take it. The work that Dr. Bihari did all those years ago told him that it was best to use it between 9:00 pm and 2:00 am. You should be able to find all this information out at the website that his childhood friend set up for him ldninfo dot org
I am so happy to hear just how many people are being helped with this as years ago no one had heard of it. Now even Dr. Mercola has come out in favor of using it. This should make many more doctors much more receptive to trying it.
I personally use Skip's pharmacy in Florida and just have it shipped to me in Chicago. He has been around this whole thing since the beginning and attends all of the LDN conferences. I met him at the first ever LDN conference and he's a great guy. He buys the Naltrexone in bulk and is able to sell it less expensively.
I hope I helped someone who is just starting out. I am ever thankful to all those that helped me in the early going.

 

[Tesscorm]

Joyce, thanks so much for sharing your experience and knowledge!

 

[JoyceF]

Oh you are so welcome. I don't mind at all if I can answer any questions. I did a lot of research years ago but have not really been all that involved with things online the same way these days.
I do want to say that I am not taking the LDN for Crohn's but for MS.
Crohn's is actually the only illness that I think has had formal controlled studies done.
I don't predict there being many for MS anytime soon as there are at least about 5 injectibles (money cash cows really) that Big Pharma will fight to keep in play for many so I am not holding my breath, can only try to steer people to these more alternative and better options.

 

[Tesscorm]

I'm so happy it's working well for you!!!

 

[kimmidwife]

Joyce
We have a great supplier here in St. Louis but are moving to Florida and I would love to get skip pharmacy number from you.

 

[KTA]

Don't mean to butt in Joyce but thought I would respond to Kimmidwife:

Hi Kimmidwife: Skips Pharmacy is listed on the LDN website if you ever need it along with some of the other reliable compounders of LDN. But here is the information:

Skips Pharmacy
Boca Raton, FLA
(561) 218-0111
or (800) 553 7429

Hope this helps! The last time I ordered my son's LDN was from Skips and I liked them a WHOLE LOT better than the other Pharmacy I was using from NY. Good Luck to you!

 

[JoyceF]

Oh not at all KTA. I'm glad to hear that you have found Skip's too. I am reluctant sometimes to post info as I don't want people to think that I am trying to advertise or something. Whenever I say something it is because it is what I truly believe and in the spirit of sharing something to help someone.
The way I see it, we are all in this together and if I can help someone I do. Thanks for posting that. Of course there are many different compounders that are quite capable and are probably selling LDN and doing it well. I just like to caution people to be careful and be sure the compounder is well versed on the whole thing. Skip certainly is. I do believe he takes it himself, what what I don't know. Many smart people are taking it to ward off cancers that run in their families.

 

[JoyceF]

One more thing...you truly do not have to be anywhere near Florida. I just call fax over my prescription and call in for refills. He ships to most locations..not sure about other countries. It doesn't get any easier, it comes right to my mailbox.

 

[kimmidwife]

Thanks for the information. I will probably transfer her prescription. I will feel a little bad though the place we have been getting it they are really fantastic so one and reliable and they have been delivering it to us but skips is going to be really close to where we are in Florida so will be quite convenient.

 

[JoyceF]

Keep in mind that Skip is very knowledgeable about LDN and how it is supposed to work. You can probably ask him questions and he'll be very capable in answering the questions.

 

[ann]

I wonder if anyone here has had experience with LDN for fibromyalgia? I was dignosed with it in 2002 by an arthritic specialist and it has ruled my life because of the extreme fatigue, pain, nausea and depression. There are no medications specifically for the this illness except anti-depression meds that my system can't tolerate.

I'm happy to read that it is helping so many of you to take LDN . I'm on a quest to find someone who will prescribe it for me here in Vancouver, B.C.

Can anyone help me with info re fibromyalgia and LDN and where I might get it??

Thank you

 

[Kev]

Regarding Fibromyalgia, I'd strongly suggest trying the lowdosenaltrexone.org website. They would know if anyone has trialed it, studies, research, etc., and if anyone who posts there has tried it. When I saw the 1st study on LDN on this website, my next step was to go to the lowdosenaltrexone site for more info on doctors, pharmacys, etc.. I got the info I was after, but it involved a lot of legwork... eer, fingerwork. I personally didn't find their site to be as.... friendly... as this one, but it gave me all the info I needed to get started. Hope that helps.

 

[ctrl z]

There was a pilot study for LDN and fibromyalgia

http://www.ncbi.nlm.nih.gov/pubmed/19453963

 

[xmdmom]

My 19 year old son was diagnosed with Crohn's 1 month ago. I learned about LDN from the forum and saw the two papers out of Penn State. I'm wondering if most GI doctors will prescribe it. My son asked his GI doc today about it but the GI doc seemed to know nothing about it 'cause he told my son it was a narcotic.

 

[ctrl z]

xmdmom - most doctors only know what it was initially used for. You have to present them with trial studies for them to even consider it.

Next time your son is at your GI, have him ask his doctor to look at the trials and studies for Naltrexone and Crohn's disease on pubmed.gov

Or you can go and search for it and print it out to give them.

If your GI won't prescribe it, then maybe your GP will. You just have to give them all the information you can get on it.

 

[LittleChloe]

Some GI s will let you try it and some won't. If you really want it I would suggest giving your doc the studies you read and just ask if you could give it a shot. For some people it works really well and you won't know till you try.

 

[ann]

Thank you for your replies.

I took the online report by Stanford School of Medicine regarding the small clinical study they did in 2009 to my doctor and although she was at first very reluctant I was able to convince her to give me a script. Her only experience with Naltrexone has been as an aid in alcoholism treatment, so I suggested to her that I could be her "lab rat"...

Took the first pill last night, very low dose 1.5mg, and will build up dosage in time.

Thanks for giving me a place to express my hope that this will work for me.

 

[mnsun]

xmdmom-"My son asked his GI doc today about it but the GI doc seemed to know nothing about it 'cause he told my son it was a narcotic. "

^I've heard others on the forum say the same, and I'm wondering if these doctors are misreading the fact that Naltrexone is an opiate "ANT"agonist, which can BLOCK the effects of narcotics (temporarily at the 1/10 dose for LDN), and confusing it with an opiate agonist, which would I guess be the same class as morphine etc... I would think of it more like an anti-drug, because any opiate addict would probably be robbed of their buzz once popping LDN.

I guess the other possibility is that doctors may read into LDNs effects on boosting endorphin production, ?possibly by 300%? (not sure how they measured this), and consider that--erroneously--to be narcotic-like?

I've been taking it for 6 months, and I can tell you it does not cause any psychological/physiological effects approaching euphoria/impairment whatsoever. It *might* give younger children energy rushes and it *might* help some adults feel slightly less fatigued? Others can chime in... I know I'm still dependent on caffeine to get me through the afternoon.

 

[momofzach]

I went to my GI today and asked to try LDN, of course the nurse practicioner had never even heard of it. I gave her some info I had printed off, and the answer was still NO. She gave me more samples of another name for the same drug I've already tried!So if anyone has a doctor in the Carolina's that will prescribe LDN, please let me know. I am willing to travel!
Christine

 

[kimmidwife]

Ann
I too suffer with fibromyalgia and something called rsd. I am planning to ask my doctor for LDN as well. My daughter has been on it since January and we are very happy. It was a fight to get the doctor to prescribe it but he finally did. She did have a couple days rbis month with some nausea but otherwise is doing very well.

 

[kimmidwife]

I forgot to mention we just moved and I found out Skips pharmacy is around the corner. I went into talk with them. They charge less then we were paying with our insurance. They don't take insurance but it will turn out less expensive. I did not get to speak with Skip I will try to next time.

 

[kad1435]

I have an 11 year old that is on 6mp and his level is really high. He is foggy and exhausted all the time. I would like to have him try Naltrexone his gastro wants him on remicade and he has no symptoms except not gaining weight which is a side affect of the 6mp. Any info on children trying this and the results would be helpful. Is it prescribed by a gastro?

 

[KTA]

Hi kad1435.......Yes....you do need to get a script from the doctor/gastro doc. I'm not real sure about studies using this on Children, but I would start at a very low dose, maybe 1mg and see how it goes. Maybe someone else on the forum has more information. You will have to find a good compound pharmacy to make it up for you. There are few good places listed on the LDN site. My son, who is an adult, did very well on LDN for 10months. He was feeling great, but he lost 30 lbs while he was on it. When he got a colonoscopy his insides looked pretty good, but he had to go off of it because of the weight issue. That was about a year and a half ago, and he never gained the weight back. A few pounds here and there, but never got back to the weight he was when he first started LDN. Not many others had this side effect, but everyone is different. Good luck to you and your son!

 

[Jmrogers4]

My son was on LDN for about a year and a half and did really well for a majority of that time he was in remission clear scopes, normal blood labs, normal fecal calprotectin unfortunately some other infections, antibiotics tripped him into a flare and we were not able to pull him out of it on LDN alone. He was growing and gaining weight while in remission on LDN (still never had an appetite though). He is currently on remicade since Jan. and doing well but his GI and I believe we will be able to go back to LDN at some point it was just our growth/puberty window was shrinking on him and we felt we did not have a lot of time waiting and hoping the LDN would kick back in, although we did give it about 6 months.
His GI prescribed it but I know that is not always the case as quite a few are reluctant because it is not a standard treatment and there has not been a whole lot of research. Some get their GP to prescribe, some go through others like a naturopath.
Since you are in Florida, you might try giving Skips Pharmacy a call and see if they can help out. They are a great source to get LDN from as well as there is a correct way it needs to be compounded.
Good luck

 

[Lady Organic]

Regarding Fibromyalgia, I'd strongly suggest trying the lowdosenaltrexone.org website. They would know if anyone has trialed it, studies, research, etc., and if anyone who posts there has tried it. When I saw the 1st study on LDN on this website, my next step was to go to the lowdosenaltrexone site for more info on doctors, pharmacys, etc.. I got the info I was after, but it involved a lot of legwork... eer, fingerwork. I personally didn't find their site to be as.... friendly... as this one, but it gave me all the info I needed to get started. Hope that helps.

Hi Kev,

I'd like to know if you're still on LDN? As we are both from Canada, I am curious because I have never heard of people in Québec taking this medication. Is it your gastroenterologist who prescribes it to you? where is your crohn located?
Im asking this because another poster here has been prescribed this drug for his crohns arthritis. I have chronic IBD arthritis as well and would be happy to know there would be another possibility of medication for my condition. How fast is it supposed to work?
thanks a lot,
lady O

 

[Kev]

Hi Lady O

Couple of thoughts (that's about my limit)... your metho is keeping your Crohns in remission... I don't know if it would be a good idea to mess with your current treatment.

OK, as to me... I still take 4.5 mg of Naltrexone (hence the term low dose naltrexone, or LDN) every night. I've been on it continuously since November of 2007. I currently have so sign of active inflammation anywhere. Oh, I should point out that I don't consider this to be a 'remission'... I have to keep taking the pills to keep the beast at bay. If I run into old, stale pills, my condition will take a downturn... so that is why I emphasize what I see to be a clear distinction. Another point for clarification... I have both Crohns AND Ulcerative colitis. The scarring from my Crohns is still quite evident (there are photos on this website someplace... just to give folks an idea as to what damage this disease can do AND familiarize themselves with scar tissue and the role it plays in my continuing pain issues. My point? Sooner you get this disease in check, the less scar tissue you'll face.

OK, I've got osteo arthritis... and it hasn't improved from my LDN use. However, LDN is a treatment for rheumatoid arthritis. Which you have will determine whether it would help or not.

My GI did prescribe it... I brought in the info on the original study, and she agreed to trial me on it. She even arranged for a local pharmacy to compound it for me (the next closest pharmacy... at the time... was in Toronto). There are at least 1/2 dozen people in this area on it (my Gi was that impressed with my improvement she put another 6 on it) and there are now 3 pharmacies who compound it. If it can happen here, why not there?

 

[Lady Organic]

Hi Kev

thanks for your reply, interesting...

first thing interesting, you mention you have both CD and UC. Well, I have a very mild CD in terminal ileon and ascending colon (which can disappear without any treatment), and I have a stronger (moderate) inderterminate colitis in recto-sigmoid mimicking a UC, and since 13 years, the diagnosis is still indeterminate. My first gastro (RIP) who was a long time well-respected professor and expert in IBD favored the UC diagnosis, but he couldnt be sure at 100%. At that time, we were not aware of the ileon disease.
I knew about it when I met my second gastro who insisted of me having a colonoscopy when I first met him. The ileon and recto-sigmoid dont get sick at the same time!!! But my main problem is my recto-sigmoid. Last year I mention that possibility to my gastro of having the 2 diseases and he didnt know what to respond... He had never heard of this possibility I believe. I'd like to understand more about your 2 IBDs and if doctors have told you that his happens occasionally in some people... Are they 100% sure you have both? I've read also thats some doctors propose another autonomous disease for the 10% indeterminate cases thats remain impossible to classify.

I must say I have been pretty lucky in 13 years of IBD with most time in pharmaceutical remission, if you prefer to call it this way :ycool: And I have no scar tissue or damage of any kind. Purinethol was my savior, but we just changed it last year for methotrexate to try to take care of that new arthritis. methotrexate is commonly used in RA. Its neither osteo-arthritis or RA that I have but a subtype of IBD arthritis, less common, that runs a course separatly than the IBD activity. My arthrtis started right after the end of a big course of prednisone 50 mg (to put my colitis in remission) and physical overwork, due to cortisone super-power feelings!!! I read your post where you mentioned that. I am sure super-women on steroids (I WISH I COULD FLY!!!!!!!!!!!!!). In my case, it almost a manic episode. During the prednisone I overworked with my hands and I triggered that new, never before arthritis that is chronic since then. A poster here has just been prescribed LDN along with his methotrexate. Im waiting about his news. So I guess that is a possibility for me. I dont want to stop my immune-suppressor. I have the possibility to start sulphasalazine along with the methotrexate, but I decided to post-pone this option for now and I am trying different natural approaches instead, such as intensive acupuncture twice a week and plan on trying magnetic pulse therapy soon. I wonder if LDN is less toxic than sulphasalazine. I really have to make more research about it. I'll gather as much info as possible on the subject and discuss it with my rhuemy and gastro next time. maybe it will be difficult to have it prescribed if they've never heard of it... My pharmacy is very big and they prepare my injections I'll ask them about LDN in the next few days. I'd be really sad to take the sulpha because the methotrexate or purinethol are already so much toxic (Low- Dose -chemiotherapy) :ybatty: and I dont want to add some more, so I am checking all my options. My condition is bearable so I can wait. I have been through worst during this last year...

for osteo-arthritis, have you tried glucosamine 1500mg once a day?

thanks a lot for sharing,
LO

 

[Kev]

Thanks for the feedback... A lot of my osteo issues stem from the abuse my body has taken over the years.... crushed ankle, shattered knee cap, damage to my shoulder from dating a woman with a jealous boyfriend.... now it makes sounds like it is broken glass.

Add to it I'm 6' 3", 240 lbs and the wear/tear on my joints over the past nearly 60 years adds up.