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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Has anyone ever got sick from LDN?


08-01-2010, 08:35 PM   #1
MrCrohn
 
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Has anyone ever got sick from LDN?

Hi Everyone,

Thi is my 3rd day on LDN (4.5)... I am feeling very sick... doesn't feel like a flare. Just feeling very tired, have a lot of flem / coughing / sore throat, stomach is acting up a bit, joints aching. I've tried LDN twice before. The first time, for just under 3 weeks. At first felt a HUGE improvement (my allergies were completely gone too), could've been placebo but unlikely. Then CD started to flare (my wife just had a baby boy then, so I tought this could have been due to stress / lack of sleep). Second time I tried it and got sick on the second day. Dunno how to explain it, but the fact that it makes me sick actually makes me think it can help... I think I will stop taking it for now and start again next week, but this time I will start 1.5. Any thoughts? (BTW - I got non-lactose fillers)

k
08-01-2010, 08:46 PM   #2
D Bergy
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LDN boosts your immune system. Any infection you have been harboring is now going to be addressed by the immune system. The throat phlegm thing could be coincidental, or it could be a prior infection that has not been dealt with before.

Arthritis is often a bacterial infection. There are several possible pathogens that can cause it. Your immune system is now trying to rid you of this infection also. Inflammation is a natural part of the immune system working, but before LDN you would become inflamed without the benefit of removal of the pathogen. With LDN your immune system becomes more effective. Once this part is over with, you should be much better. It takes months for this process to run its course.

It is hard to differentiate healing and sickness, but if you look at it in the context of what the drug is doing, it makes more sense. LDN cannot give you a bacterial or viral infection, but it will make your body kill infections you already have. This is likely what you are experiencing now.

Good luck, and I hope this goes away sooner rather than later. But I would stay on it, because it is part of the process more often than not.

Dan
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08-01-2010, 08:57 PM   #3
Dexky
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Fantastic info as always Dan. MrCrohn, why don't you intro yourself in Your Story. Sure you'll only get simple welcomes from those like me, but you'll also be intro'd to many more like Dan here who actually know what they are talking about. Good luck!!
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08-01-2010, 08:58 PM   #4
MrCrohn
 
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Thanks Bergy, I agree w/ you completely... I dunno if I can stay on it though b/c if this gets any worse I may wind up at the ER... this why I am contemplating to stop and start again w/ a smaller dose.
08-01-2010, 09:01 PM   #5
MrCrohn
 
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good thinking Dexky!! I will jump on YOUR STORY now...
08-01-2010, 09:02 PM   #6
D Bergy
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You may have to start and stop if your symptoms become too much, but use it as much as you can. Lots of people have the same problem when starting. If it is working as it should, these will pass over a longer time period.

Welcome to the forum.

Dan
08-01-2010, 09:45 PM   #7
MrCrohn
 
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Lots of people have the same problem when starting.
Dan
interesting... I thought I was fairly unique in not reacting to it very well... what do most people do? I guess the only options are: bite the bullet, stop taking it, or start over w/ reduced dosage...
08-01-2010, 11:20 PM   #8
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hi MrCrohn

i'm on LDN right now... this is my 2nd go with it - i used it for a few months last year and then stopped due to problems regarding delivery of the LDN from the pharmacy. both times i had no real side-effects even from the beginning, but i did start at 1.5mg and work my way up to 4.5 very slowly, leaving 5 nights on each dose in between before moving up by .5mg.

what time of day are you taking it? and is it in liquid form? also, are you having a decent meal and fluids in the hours before taking it?

i think these factors are relevant... i always have something at evening meal time, even if it's just a piece of toast, and i drink plenty fluids both at the meal time and in the evening... i take my LDN (liquid) immediately before i go upstairs to bed, and therefore sleep through the initial feelings it brings. by the time i wake in the morning, i have absolutely no evidence of the effects, no nausea/dizziness etc.
08-01-2010, 11:39 PM   #9
MrCrohn
 
Join Date: Jun 2010
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dingbat,

taking it around 10 PM in pill form.. I don't think meal / fluids have anything to do w/ it (for me), b/c I am not getting an upset stomach after I take it or anything like that. I think I should just stop for a while and then start at a lower dose... I am just very sensitive to meds (even a teylenol can make me dizzy...)
I just emailed my GI that I need a prx for 1.5 mg LDN. I am stopping the 4.5 for now, will take a few days to recover, then will start w/ the 1.5 mg LDN.

I think it will work. I have a lot of faith in this drug... weather it does or doesn't I am still gonna try the hookworms soon (have a 4 month old baby boy, and moving to a new house next month, so now doesn't seem like a good time).
either way I will keep you all posted!!
k
08-01-2010, 11:54 PM   #10
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i would say that what you're planning sounds very sensible - i am also extremely sensitive to medicines (and other things - i had literally a 3rd of a bottle of corona beer last night and immediately felt drunk/dizzy and it went into a migraine that lasted 3 hours).. i've also got more allergies and sensitivities than i used to have, so that's why i was strict with my LDN dose and started on such a low amount.

i would recommend the taking it immediately before you go to sleep though (don't know if 10pm is your bedtime or not) but the only times i have felt any weird effects from the LDN have been when i've stayed awake after taking it.
08-08-2010, 09:02 PM   #11
TheWelshBoyo
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Just like to post here, no LDN doesn't "raise your immune system".
If it did, then given that Crohn's is an autoimmune disease, surely we'd all go into WORSE flares on LDN. Not saying it doesn't work, just making a point.
08-08-2010, 10:52 PM   #12
Poppysocks
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Just like to post here, no LDN doesn't "raise your immune system".
If it did, then given that Crohn's is an autoimmune disease, surely we'd all go into WORSE flares on LDN. Not saying it doesn't work, just making a point.
Since you seem to be so adamant on having Medical literature as evidence backing up your claims, I'd like you to find a study or article PROVING that Crohns is an autoimmune disease.

Actually don't waste your time. Crohns being an autoimmune disease is ONE THEORY, it has not been proven, there are many different theories as to what is the possible cause of Crohns.

Also, since you weigh about 80-90 lbs I'm guessing you're pretty young. You should know that Prednisone causes growth retardation in children, this HAS been proven over and over. I wouldn't recommend taking it if you haven't/currently gone through puberty. I'm only saying this because I was on Prednisone before I hit puberty and it pretty much ruined my adolescence, I wish I had explored alternative forms of treatment at that time, but I was young and did whatever my doctor told me.
08-08-2010, 10:57 PM   #13
TheWelshBoyo
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I've been diagnosed with delayed puberty already, due to the Crohn's disease.
I've already failed to grow. Heck, I am a midget compared to my friends in school. I'm 16 (nearly) and yet I look 12. I am going to see a growth specialist in October.
However, I've not gone randomly speculating that Crohn's is an autoimmune disease.
I am making that claim based upon the fact that drugs such as immunosuppresants and disease modification drugs work on it.
08-08-2010, 11:08 PM   #14
Poppysocks
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I've been diagnosed with delayed puberty already, due to the Crohn's disease.
I've already failed to grow. Heck, I am a midget compared to my friends in school. I'm 16 (nearly) and yet I look 12. I am going to see a growth specialist in October.
However, I've not gone randomly speculating that Crohn's is an autoimmune disease.
I am making that claim based upon the fact that drugs such as immunosuppresants and disease modification drugs work on it.
Sorry to go on a tangent, but you should look up the medical literature on Enteral Nutrition AND Crohns. You should think about going on a total liquid diet, the efficacy rates of going on Total Enteral Nutrition are as high as corticosteroids, and you don't have to be on drugs delaying your bone growth. It has the possibility of helping you gain weight and healing your gut mucosa. Just saying I've been through what you're going through and I wish I would've given Enteral Nutrition more of a shot.
08-08-2010, 11:12 PM   #15
TheWelshBoyo
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I'm currently on Modulen IBD, about a litre a day.
I discussed the idea with my gastroenterologists. One is in favour of Modulen as a supplement, the other not as much. After discussion with both, we all agreed that I could use the extra calories and any anti-inflammatory effect it has can only be good!
I did however make the choice to use steroids and azathioprine as my main treatment. I've made multiple failed attempts to taper the steroids. I got down to 20mg before I had to put it up the first time, but only got to 30mg on the second.
Back on target, in the interests of being fair and scientific, I have found a paper that goes against what I have said. http://www.thelancet.com/journals/la...rinterFriendly
Published in the Lancet and on PubMed. I would read the article, but I do not have $31.50 :P Still, I was basing my claim on the fact that immunosuppresants and biologics work on Crohn's.
08-08-2010, 11:28 PM   #16
Poppysocks
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Sounds like you are only on partial enteral nutrition. From what I've read, the efficacy rates go way down when you're still eating food, and the high remission rates are from being on Total Enteral Nutrition (100% liquid). Read this...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691486/

Last edited by Poppysocks; 08-08-2010 at 11:30 PM.
08-08-2010, 11:30 PM   #17
TheWelshBoyo
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Yes, I am on only partial enteral nutrition.
I'd rather be on medication and eating normally than going Modulen only.
I'm sick of the taste of it already, and I've only been having 500ml - 1ltr a day.
I even have 3 different flavourings. I wouldn't be able to take it.
08-08-2010, 11:32 PM   #18
TheWelshBoyo
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Corina Hartman, Rami Eliakim, and Raanan Shamir said:
Growth retardation at diagnosis has been reported in 23%-88% of children with CD and may precede the gastrointestinal manifestations by years.
Finally! I have some proof.
I knew, once I was diagnosed, that it must have had a grip on me for many years. (I've not grown more than a couple of inches in 4 years or so)
Now I find there's a PubMed published article that agrees with me on this :P
Not that my gastroenterologists don't! I just hope I get approved for growth hormone treatment or sommat.

Last edited by TheWelshBoyo; 08-08-2010 at 11:34 PM.
08-08-2010, 11:54 PM   #19
Dekar
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To put it simply, there are attacker cells, and there are relaxer cells. These "relaxer" cells tell the attacker cells to stop. People with auto-immune diseases apparently have a wacked out "relaxer" cell function. LDN is thought to regulate these cells. So, it does boost the immune system if you think about it, but not in the classical sense.
08-09-2010, 12:07 AM   #20
Poppysocks
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Finally! I have some proof.
I knew, once I was diagnosed, that it must have had a grip on me for many years. (I've not grown more than a couple of inches in 4 years or so)
Now I find there's a PubMed published article that agrees with me on this :P
Not that my gastroenterologists don't! I just hope I get approved for growth hormone treatment or sommat.
Corticosteroid use (prednisone) will make it worse though, it is known to cause growth retardation and stunt bone growth in children.

Not a doc but if you really are concerned about your growth you should consider dropping the steroids and going on T.E.N. You're lucky you even have that option as I'm going to be trying to get on it shortly but insurance doesn't cover TEN often in the states. Just my opinion.
08-09-2010, 12:59 AM   #21
Crohns08
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TheWelshBoyo - You should do your research more thoroughly if you're so adament about evidence, hon. The new theories are that crohn's disease is in fact because of an underactive immune system. They surmise this because they believe that there are secondary inflammations from an immune system that isn't working right. LDN actually raises the production of endorphins which does boost your immune system. They also believe that vitamin D fits in the mix as well. I'm more likely to go with this theory because the only medication I've done well on is pentasa & LDN. I've been on 60 mg of pred and it didn't really do anything for me.
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08-09-2010, 05:12 AM   #22
TheWelshBoyo
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TheWelshBoyo - You should do your research more thoroughly if you're so adament about evidence, hon. The new theories are that crohn's disease is in fact because of an underactive immune system. They surmise this because they believe that there are secondary inflammations from an immune system that isn't working right. LDN actually raises the production of endorphins which does boost your immune system. They also believe that vitamin D fits in the mix as well. I'm more likely to go with this theory because the only medication I've done well on is pentasa & LDN. I've been on 60 mg of pred and it didn't really do anything for me.
Reference please?
All I've heard so far about LDN is a load of pseudoscience.
08-09-2010, 05:41 AM   #23
TheWelshBoyo
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Ah, I wouldn't mind trying Ensure Plus, even if just for the additional calories.
The thing about Modulen, however, is it has Transforming Growth Factor beta 2, which they claim has an anti-inflammatory effect, so therefore directly helps in reducing the inflammation associated with Crohn's.
I was given the choice of liquid only diet or steroids. After weighing it all up, with the post-remission problems of Modulen and the like, I decided to go with the 'roids.
Thankfully, my gastroenterologist has now said I qualify for infliximab if necessary. Before, it was the 'roids and azathioprine or a right side hemicolectomy. I'm glad I now have another treatment available to me.
Also, yes, I am going into Year 11 now. I just had my science modular exams screwed with. I was meant to be doing C1, C2, P1, P2, B1 and B2 in May/July, but my GE said he didn't want me to do them. Annoying, but I'd rather not have to re-do them!
08-09-2010, 01:42 PM   #24
Crohns08
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Suppressing the immune system only buys you time. If it actually did "kill the crohn's" then a lot of good people on here wouldn't need resections or find that their bodies are having problems responding to some of the drugs.

There are ongoing studies on LDN. Here is a website and a video link posted here by a fellow member that I'm linking you to. Everything you could want to know about LDN and how it works can be found there.

http://www.ldnscience.org/

http://www.youtube.com/watch?v=xr-n8jMLenU
08-09-2010, 02:02 PM   #25
TheWelshBoyo
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OK, maybe a better word I should've used is suppressed the Crohn's.
08-11-2010, 11:04 AM   #26
GingerCat
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Welsh Boyo- Just wondering if your gastroenterologist has suggested Elemental 028 Extra which is a pre-digested elemental feed? Don't know if it would be suitable for you but it might be worth checking it out.
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