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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Six years plus on LDN


 
12-11-2013, 08:33 PM   #1
Kev
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Six years plus on LDN

Hi all

Thought I'd pop in here with this. Anyone who doesn't know me, I started on 4.5mg of Naltrexone (LDN) in November of 2007. I've taken it nightly ever since, and it brought my disease under control and has kept it there.

I've been asked over the years about potential side effects. The only side effects I encountered were some vivid dreams at the start. Beautiful.

Recently, I quit smoking... well, it has been months now. I started off slowly tapering... then switched to NRT, then came off everything. I was concerned that rocking the boat this way would cause me to flare.. to lose remission.

Good news... quitting hasn't resulted in any flare, any change in my disease. But, there is some bad news. After years of taking LDN without side effects, now I suffer from sleep disruptions. And it is getting to be problematic. My best description of my sleep issues is... imagine you go to sleep, only to dream you were wide awake all night. I know that may sound bizarre. But it is like I'm... aware... while I'm sleeping. I get up several times a night, and I'm usually awake 1 hr before my alarm goes off (around 4 AM) but the bad part is that... even if I get to sleep... it doesn't feel like a deep restful sleep.

I don't know what comes next.. but I can't continue like this. I have to come up with a solution... short of smoking. Bizarre that smoking spared me this.
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12-11-2013, 10:38 PM   #2
nogutsnoglory
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Kev congrats on 6 years of mostly success with LDN.

Can you take a sleeping pill along with LDN or maybe melatonin? I'm not sure about interactions but maybe there is a way to remedy the situation. Strange that it happened after so long.
12-11-2013, 11:43 PM   #3
Searchingforhealth
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Kev, I'm sorry to hear of your sleep issues. It may not be related to LDN. I know sleep problems happen to me if I am very worried about something or someone in my life. Also lack of exercise, or watching a very exciting or tensing TV show late at night can be the culprit.
12-12-2013, 11:12 AM   #4
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Are you sure the sleep issues are a side effect of this, or are there any other possibilities?

When I suffered from insomnia caused by prednisone, taking Amitriptyline cured it completely. It wasn't just insomnia either - I was constantly restless during the day too, but Amitriptyline made me peaceful all the time and gave me better nights' sleep than I'd ever experienced before, and it still does.
12-12-2013, 10:02 PM   #5
Kev
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The only change has been quitting smoking. Other than that, my life pre/post quitting is the mirror image of each other. As for exercise... my work is my exercise. Again, no change there either.. As for sleeping pills... I don't know if that is an option. I work as a garbage truck driver... some pills/meds just don't go with that type of profession. My job can ask for a blood or urine screening test for any N sundry types of drugs/medications.

But the real reason I brought this up was... in the past, if someone trying LDN for the 1st time complained of sleep disruptions, I would write it off as very little to complain about.

Now, I humbly present myself here... eating humble pie, and losing sleep over it too. OK?

My apologies to anyone who thought I might have dismissed complaints about sleep loss!

I did. I learned my lesson. The hard way. That will teach me. I do believe I had it coming!

kev
12-13-2013, 06:05 AM   #6
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I know what you mean. I had no idea how awful insomnia could be... until I got it.

Why would sleeping pills be an issue with your job? There are so many, surely your doctor could prescribe something that wouldn't flag up as suspicious on drugs screenings, or provide a letter for your employers stating that any changes in your test results are due to a prescribed med? Though I guess the warnings that some sleep meds carry telling you not to drive if you're drowsy could be a problem. But I don't know how I'd survive prednisone-insomnia without sleeping meds.
12-13-2013, 07:13 AM   #7
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The only change has been quitting smoking. Other than that, my life pre/post quitting is the mirror image of each other. As for exercise... my work is my exercise. Again, no change there either.. As for sleeping pills... I don't know if that is an option. I work as a garbage truck driver... some pills/meds just don't go with that type of profession. My job can ask for a blood or urine screening test for any N sundry types of drugs/medications.

But the real reason I brought this up was... in the past, if someone trying LDN for the 1st time complained of sleep disruptions, I would write it off as very little to complain about.

Now, I humbly present myself here... eating humble pie, and losing sleep over it too. OK?

My apologies to anyone who thought I might have dismissed complaints about sleep loss!

I did. I learned my lesson. The hard way. That will teach me. I do believe I had it coming!

kev
I always got terrible insomnia whenever I stopped smoking (I've stopped and started 100's of times, sometimes for days, sometimes months, sometimes years). I stopped for good when I was diagnosed 2.5 years ago. Anyway, I ALWAYS get insomnia when I withdraw from nicotine, and it lasts for about 6 months.... Maybe your body hasn't adjusted yet, but will eventually? In the meantime I would definitely look into some sleep aids, as insomnia can become a vicious cycle of being so stressed about sleep that you can't sleep... I hope you find a solution!
12-13-2013, 12:16 PM   #8
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Encouraging read, I have been doing great for 2 months and having a little flare at the moment. So I am panicking slightly. Kev, did you have flares initially? Did you achieve 'complete' remission as in no symptoms and how long did that take? I know it was a long time ago so you might have forgotten
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12-13-2013, 08:01 PM   #9
Kev
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Thanks for the feedback.

First thing... this isn't insomnia. I sleep, but it is like I'm sleeping AND aware of everything that is going on around me... even that description isn't accurate. Very hard to put it into words... closest was my initial description. Like your asleep but dreaming you are awake. Try wrapping your head around that.

OK... here is what it was like for me in the early days. If I got a bad cold, or flu, or if my pills were old... then I would notice very minor things... like maybe an extra trip to the WC, or softer, less well formed stools. But, nothing outrageous.. no bleeding or cramping. If it was brought on by a bug.. then within a few days of the bug dying off, I'd be back to good as new. With the pills... last few days on them, same slight increase in the issues... extra BM, stool not really formed. But, new batch... within 2 days good as new. Over the last few years, I've noticed that the flu or cold doesn't cause it anymore, and I've avoided stale batches of pills... so, maybe I've been healthy so long my immune system is back to full normal... or maybe I've been fortunate not to catch a bad bug, or it could be some of Column A and some of Column B. All I know is.. the longer I go on, the better it seems to be (and there is enough of a superstitious fool in me that I twinge a bit as I write this on Friday the 13th)
12-31-2013, 11:19 AM   #10
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Hi Kev, I am trying to get an rx for the LDN and I just need to know is this something I will be taking everyday for the foreseeable future or do you take rounds of it and then get off it? thanks I have CD and do not respond well to drugs even pentasa gave me ruthless headahces....looking for something to help.

thanks again

OB
12-31-2013, 08:52 PM   #11
Kev
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Hi OB

I've been taking it every nite for 6 years.... sort of like a diabetic and insulin, I guess. No side effects, AND no issues from taking it continuously. Some have opined that you should periodically discontinue.. to avoid a build-up. I never have, haven't researched it, so I dunno. As for whether I 'need' to keep taking it... my 'hunch' is yes. Reason I say that is that myself and others have noticed slight worsening of condition with old pills. So my guess is that we need to stay on them until someone comes up with an absolute cure.
12-31-2013, 11:26 PM   #12
my little penguin
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Both agents produced insomnia. Deep slow wave sleep was sharply inhibited, and rapid eye movement (REM) sleep was entirely suppressed. Light slow wave sleep, occurring in brief, isolated episodes, became the most abundant stage of sleep. The nuchal electromyogram was markedly increased after both agents. Naloxone (100 microgram/kg), injected subcutaneously 30 min before beta-endorphin or morphine SO4, entirely reversed these agents' effects on the two stages of slow wave sleep, and antagonized the exaggerated electromyogram. But naloxone did not counteract the REM-suppressant effect of either beta-endorphin or morphine SO4. Total sleep time reverted towards control values after naloxone pretreatment, but not entirely; the difference may be due to the persistent deficit of REM sleep. The data may indicate an involvement of an inner opioid in the regulation of sleep and wakefulness in the cat, and may point to a role for more than one endorphin receptor in the effects of opioids on the states of vigilance in cats
From
http://www.ncbi.nlm.nih.gov/m/pubmed/6272385/


So if LDN suppresses endorphins which tricks the body into releasing more all at once
Maybe that is messing with your REM sleep etc...
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01-01-2014, 11:52 AM   #13
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Thanks Kev, what is the deal with the REM sleep above. Does it affect your sleep a lot? I have issues with getting to sleep already....
01-01-2014, 01:03 PM   #14
Kev
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I never had sleep issues except for those great dreams. Never. Then I quit smoking. And bingo! Sleep issues. Like being asleep and vividly dreaming you're awake. Weird. It sucks. Here's what I did. I now take my LDN 4+ hours before bedtime, and I sleep good. Not the deep coma sleeps I used to have, but a non troubled nights sleep of 7 hrs or so. And, tho it is still relatively early, my gut tells me it hasn't affected the way my LDN works. (like, it my pills were old, I'd know within a couple of days they weren't doing such a good job.) So, switching the 'when' I take them hasn't caused me any grief.
01-01-2014, 01:41 PM   #15
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ok we'll see how it goes. thanks !
01-03-2014, 04:27 PM   #16
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Hi Kev, I'm just starting my journey on ldn. The first week was good. Now into my
third week I am flaring a bit, although I tried to go up from 3mg to 4.5mg and that might just be too much for me...I hope that it doesn't last long. I feel awful. Headache, restless, diarrhea, crampy...
Anyway, just wanted to say thanks. Your story is encouraging. I think if it wasn't for this forum and your (and others') encouragement I'd be quitting this med. I refuse to take immuno suppressants or prednisone, so this is kinda my
last resort.
I also wanted to add that I have the same sleep issues that you are talking about on ldn. So frustrating! Sometimes I dream about my day, like getting up and getting showered and dressed and stuff and wake up and can't remember if it really happened or not. I've been taking melatonin with the ldn and it does help although I still don't sleep as great as before. However, if this can help put me in remission, I'll deal with it!
01-03-2014, 05:26 PM   #17
Kev
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Hi there. Yeah, the sleep disruptions that I used to pooh pooh (maybe a Crohnie shouldn't be allowed to use that term? But, if not us, then who?... people named Winnie?)... But I digress. I am not up on the mechanics of melatonin, AND I truly really don't comprehend the mechanics of how LDN works, how it creates the rebound effect, AND what other drugs... especially neurologics... you can or can't take with LDN. I don't know if melatonin is compatible or not. But, since LDN is your last resort, check into it. I was able to circumvent this 'awake while asleep' issue by rolling back when I take my LDN. If the melatonin isn't compatible... then you have to weigh your options and choose.
01-06-2014, 04:23 AM   #18
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If anyone is having trouble sleeping you could try banana tea. You cut the ends off of a banana and put it in boiling water for 10 mins and then drink the tea it makes. You can also eat the banana. Do that an hour before bed and it's supposed to be like taking a sleeping pill.
01-06-2014, 10:17 AM   #19
Farmwife
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You cut the ends off of the banana. So do you use just the ends only or just the banana part to make the tea?
Keep in mind I'm not a big tea drinker. I do love idea of banana tea.
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01-06-2014, 10:44 AM   #20
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You put the whole banana in without the ends. I'm not sure how good it is because my brother and dad tried it, not me, but you can flavour it with cinnamon or whatever else you can think of.
01-06-2014, 12:36 PM   #21
Farmwife
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I will try out for Grace and I. Thanks
01-10-2014, 04:53 PM   #22
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Hi Kevin. Thank you for posting your experience. I'm about to start LDN for my Crohn's and it's really helpful to read about other peoples experience with it.

Has anyone yet suggested that you switch taking the LDN to the morning instead of evening? I wonder if that would help you sleep better.

Regards,
Hero
01-10-2014, 07:38 PM   #23
Kev
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I suggested that.. to my GI. She counter suggested we 1st try moving it back a few hours (I guess to be safe... no big reversals or changes). I did that. 4 hours. It worked.
05-17-2014, 03:08 AM   #24
Kev
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Hi all. Here is a post I hoped I'd never have to make. It appears I have lost my remission. Presto, chango... here today, gone tomorrow.

Alright, been a long build up to this. First, there was the end of a beautiful relationship. It ended amicably, but it ended... so there was some stress. And, believe it or not, for the past 3 months I've been fighting an earache. Yes, just an earache.. but it disrupted my sleep... night after night.. couldn't get a decent nights rest. And work has been crazy. There was a rumor floating around that our company had been sold. Turned out it was true... again, a lot of... unrest... worry... stress. Then I caught the flu, and it stayed and stayed... was just getting over it.. thought it was rebounding.. turned out it was my Crohns... came back in a matter of hours... right back to where I was at my worst. Trips to the bathroom in the dozens... pain (hmmm, old scar tissue pain isn't as sharp as new pain). Anyway, been so long in remission, I have to wait for a referral to see my GI. I'm seeing my GP on Tuesday. My boss says they'll keep my job for me, but.. I don't know..

I'm hoping it is a bad batch of pills... or that, maybe a short course of steroids and a fresh batch of pills will put me right as rain. But there is the possibility I've become.. immune.. to it. Or it has built up in my system. Or, the disease found itself a workaround. Anyway, November of 2007 t0 May of 2014.. it was fun while it lasted.
05-17-2014, 07:56 AM   #25
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sorry to hear this.
I pray it's a bump in the road and your back on the road to recovery very soon.
05-17-2014, 09:06 AM   #26
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Kev, Maybe It was just the stress of what your life has brought you all the sudden. I pray that there is no getting "immune" to LDN. I have been on it for 6 month and always enjoyed your upbeat updates on your condition. Sorry to hear you dropped out of remission. Let us know what you end up doing about it.
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05-17-2014, 10:03 AM   #27
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So sorry to hear that you are not doing well. I know that everyone on the forum has appreciated all the time you have spent helping us. All our thoughts are with you during this terrible time. Have you checked out the treatment section lately. There is a trial going on for crohns in Vancouver right now called SSI. It looks very promising and might be worth a try. I am on the wait list for the ulcerative colitis trial that they are doing in the future, hopefully soon. However I do know that they still have space in the crohns trial as I was just at a lecture given by the doctor running the trial.
05-17-2014, 10:55 AM   #28
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Cannabis helps me with sleep more than anything and you don't have to smoke to use it...sorry to hear of your new side effect!
05-17-2014, 11:45 AM   #29
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Sorry to hear that Kev. I think with what you've been through it's only natural a relapse could happen. Is it possible a short course of steroids might bring your inflammation into line to allow the LDN to work again?

Hope you're ok.
05-18-2014, 07:32 AM   #30
Kev
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Thanks everyone... I'm hoping that some steroids... plus recuperating from this flu.. will let the LDN kick in again. If it doesn't, then I really have no idea what my future holds.
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