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Six years plus on LDN

Kev

Senior Member
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.
 

nogutsnoglory

Moderator
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.
 
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.
 

UnXmas

Banned
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.
 

Kev

Senior Member
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
 

UnXmas

Banned
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.
 
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!
 
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
 

Kev

Senior Member
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)
 
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
 

Kev

Senior Member
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.
 

my little penguin

Moderator
Staff member
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...
 
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....:eek2:
 

Kev

Senior Member
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.
 
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!
 

Kev

Senior Member
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.
 
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.
 
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.:emot-dance:
 
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. :dance:
 
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
 

Kev

Senior Member
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.
 

Kev

Senior Member
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.
 
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.
 
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.
 
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!
 
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.
 

Kev

Senior Member
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.
 

Kev

Senior Member
Thanks everyone.

Here is a downside of going LDN. If it stops working for whatever reason, (and I'm praying it is a bad batch.. a compounding mistake... something like that) then you don't have anything to fall back on. At the moment, my disease is flaring out of control... and I won't see a doctor until 8 PM tomorrow night. And that will just be with my normal GP.
 

Kev

Senior Member
Hi everyone. Current status is... I'm on 60mg of pred and back on 5-ASA. Because I'm on pred again, I'm off LDN for the present. The plan (of my GP, still waiting to see my GI) is to halt this... then try to come up with a long term plan. So, fingers crossed now.
 
Hi Kev. Really sorry to hear about your setback. I've been following your story and you are the LDN guru around here:) Many of us owe our success with LDN to the confidence we gained from reading your posts and giving it a try.

I hope the pred does its thing and rapidly gets you back to a good place.

I have read that LDN can stop working after a time, as the body gets used to the 'rebound' effect it provides. In an interview in 2009, Dr Zagon discussed this possibility and suggested stopping it and then restarting, or reducing the dose. He says this restores the efficacy of the drug.

Here's the interview, if you haven't heard it already:
http://www.blogtalkradio.com/mary-boyle-bradley/2009/06/23/the-mary-bradley-show

Wishing you a very speedy recovery

Helen
 

Kev

Senior Member
Thank you.. thank you immensely.. for both the kind words and the useful information.

My prayer is that this is the result of a bad batch. My hope is that... I've been off it for the past week while on high dose steroids... that I can get a brand new batch made by one of the more experienced compounders here... and that things will go back to normal in a couple of months.

My fear was that... after years... it might build up within me.. and just stop working. But I took hope from that Norwegian documentary that others had gone longer without issues.

All I can do now is hope for the best... keep my fingers crossed.. say my prayers. And, of course... express my appreciation to those who have taken the time to write. Thank you.
 

Kev

Senior Member
OK, just a quick note. I'm being admitted to hospital shortly... within the next few hours. I have no idea as to when I might be getting out.. I'm being tested to see if Remicade is a possibility. Anyway, if you notice I'm not around, I'm in hospital ... rumours of my death are only slightly exaggerated.
 

Kev

Senior Member
Well, hello all.

God, this is going to sound (eeer, read) so damned dramatic... but, I'm not making this up. OK, I'm home from a whirlwind trip to the hospital. Checked in yesterday, spent until midnight in the ER, then admitted to the 8th floor around 12:05 AM.. and saw a wide diversity of doctors up until approx. 2:30 AM.. then was given something to knock me out... stayed out until 8 AM (first sleep I've had in weeks, and even that sucked). I've provided stool samples, blood work, urine samples... then at 10 AM this morning, without an enema or cleanout... they scoped me.. without sedation.. and to have to love it when that happens... because... at least the 3 - 4 feet up they went with the sigmoidoscope, I am STILL in remission. No side of any active inflammatory disease of any kind or shape. They biopsied me... I mean... while they were in the neighbourhood, why not, right? The theory is... that the 'flu' bug... triggered this... or managed to get into my GI tract, or a counterpart from it... and that I've some sort of viral, bacterial or other infection going on inside me. Problem is... they've kiboshed my immune system with high dose steroids for the past 2 weeks... so I can't fight it off. Their game plan... to safely wean my off pred so my body has a chance to fight this.. on its own. That is the plan. Whether it will work, whether their guess is right... or even the remote chance that this infection is some major BADASS... h-pylori.. c-diff... only time will tell. But, I saw with my own eyes, while wide awake being scoped... that is sure doesn't look like I've lost my remission at all. YES!
 

Jmrogers4

Moderator
Well that is some Good News/Bad News. Glad you are still in remission and hope they get the other stuff figured out quickly. My plan is for Jack to go back to LDN someday but he is doing really well right now and I don't want to rock the boat.
 
Oh, Kev, that is so great to hear! You must be so relieved. Now you can focus on kicking this bug/virus out of your system and get back to enjoying remission:):)

Thanks for taking the time to update us too; it is much appreciated!
 
Awesome! I was starting to second guess my decision to go on LDN there for a little bit, In fact I was going to go back to methotrexate. Glad you know what it going on.
 
Hi Kev!

I have been lurking here and feel that I know you. I took many suggestions and saw a NP and will be getting my LDN from Skip's next week.

I wanted to thank you for your story and let you know I have been praying for you while you have been ill.

May you continue to feel better and thank you again :)
 
Hi Kev: Just checking in to see how you are doing??? I've been reviewing tons of old posts and it is evident that the information and experiences you've lived have helped so many.
I've been on LDN for a week and the only side effect i've experienced is headache and tired. Feel like I could sleep a lot!

Will look forward to your update.
 
Kev, I am glad that you are out of the Hospital and making progress. Ouch to being scoped without sedation though! I hope you continue to improve and fight off the bad virus. If it is CDiff get a good donor and do FMT. That helped my daughter rid herself of CDiff. She just started LDN at 1.5 every other day and is doing really well.Another very helpful thing health wise, especially for auto immune issues is to get lots of vitamin D. She is taking 2000 mg. / day drops,as well as sun worshiping regularly. Please keep us posted on your progress.
 

Kev

Senior Member
Hi folks

Fecal transplant is not an option here for the moment. Unless I go the same route as the gentleman who did the 'do it yourself' transplant to cure his c-diff. He was set to have it performed at the hospital... but the hospital pulled the plug citing they had no guidelines in place for the procedure... more or less corporate 'cover your ass'.. leave the patients hanging. True story... he did it himself... cured his c-diff.

Anyway... just hoping I can manage the transition off the pred nice and easy, and that while my immune system is suppressed... this infection doesn't go hold wild on me.
 
Hi Kev! Glad to hear you're not totally out of remission...Like others have stated, we sort of look up to you as a golden leader for decisions to go on LDN, as an alternative to getting cancer from 6mp and such (even though it's a low risk) :) But what I want to ask you, is if you've ever asked your doctor if LDN works like Pentasa...just like a "bandaid", topically, but not really stopping disease progression...?

I used to run from mainstream meds since my case is mild, but it clicked recently that ok, maybe I should be on medication, and worry that LDN and SCD would be barely controlling the progression, acting more like Pentasa....vs 6MP. I know it's not known how LDN works, but I just wonder if it's more topical, or rooted deeply, to prevent worsening...

it's hard...i don't want to end up with resections and fistulas, but don't want to end up with cancer either....

thank you for all your posts, Kevin, and I hope you're recovering quickly!!
 
.....LDN and SCD would be barely controlling the progression, acting more like Pentasa....vs 6MP. I know it's not known how LDN works, but I just wonder if it's more topical, or rooted deeply, to prevent worsening...

it's hard...i don't want to end up with resections and fistulas, but don't want to end up with cancer either....

thank you for all your posts, Kevin, and I hope you're recovering quickly!!
Unfortunately, none of the drugs used for Crohn's can guarantee deep healing-not 6mp or Imuran, or even the biologics. This article describes how the introduction of Infliximab has not had a real impact on surgery rates:

http://www.ncbi.nlm.nih.gov/pubmed/20585239

And this one is a very detailed and recent review of data that also finds no significant impact on surgery rates in the post-biologics years:

http://www.ioibd.org/wp-content/uploads/2012/09/Surgery-and-hsopitaliz-in-Crohn-Gut-2012.pdf

In my view, unless a drug can show success in most people and reduce complications in the long term, then it is not inducing deep healing, but merely keeping symptoms at bay for a while. Of course, that's still preferable to being sick all the time. I hope and pray for a real breakthrough, a novel approach, not just more immune suppression drugs.
 

Kev

Senior Member
OK... It's very hard for me to write this. But, I'm out of remission... totally. The 'diagnosis' saying I was still in remission was an out N out mistake. I'm in full flare, it did an absurd amount of damage to me... and the docs just got things to turn around just a few days ago. I'm no longer on LDN. My disease was flaring that bad, that fast, that it was just not an option. So, LDN is no longer part of my treatment regimen, and I've been put on Remicade. Hoping it will work in the long term...

I'm not ruling out returning to LDN in the future. But I've always advocated that if what you are using is working.. don't rock the boat. Considering what I've been through, I've no intention of rocking 'my' boat.

Couple of final thoughts... I don't know if I flared because A) a mistake in compounding the LDN at my new pharmacy B) it was a stale batch.. the old leftover issue cropping up C) I got stupid, cocky... I stopped watching my diet, stopped taking 5-ASA, quit smoking
D) Things just piled up beyond the tipping point.. work stress, family stress, relationship stress, physical stress from the flu and my crazy workload E) The disease just finds a way

I had 6 1/2 good years on a drug safer to take than Aspirin. Maybe all good things just end
 

Orchid

Banned
It's excellent that you have the maturity to admit something wasn't working for you instead hiding from what was happening to you. I think you'll find Remicade infusions just as easy once your over the loading dose. :) I'll put you in my prayers.
 
Kev, thank you for the honest update and I really hope Remicade turns things around for you quickly. Thinking of you and wishing you another very long remission period.
 
I'm so sorry that you are out of remission. I am still fairly new to this disease but it seems to me a good thing that you lasted so long on medication that was so "mild". I will continue to keep you in my thoughts and do hope that you stick around this board because I'm sure you are still considered the LDN "expert". Hope the Remicade does the trick.
 
Kev, you are the one that convinced me to give LDN a try. I thank you for all you have done for us and wish you a very speedy recovery. You are in my thoughts and prayers!
 
6 years is a pretty good run!! Unfortunately it seems most meds stop working at some point. But I am keeping my fingers crossed Remicade works it's magic for you:) And maybe LDN can be revisited in the future.

Either way, thank you for all the information you have given on the forum about your experiences with LDN. We personally aren't going to 'rock the boat' right now because 6mp is working well for our son but it is so great to hear about all the options. And nice to keep LDN in mind for the future.

Hope you are feeling great very, very soon!! Take care:ghug:
 

Jmrogers4

Moderator
I hope that remicade works as well for you as it has done for Jack and we were in that same rocky boat a few months ago and had to move on. I did the same questions, was it something wrong with LDN, was it something we did or was it normal growing boy hormones that changed or did it just quit working.
I think you will always be the LDN guru around here. Hope things are under control quickly.
 
Kev,
If I had to bet my money I'd say either D or E...
I am going through some situation myself and similar thoughts keep haunting me...
I'd say you had the worst combination of stressed mind & body with just some bad luck.

Please get well soon. It sounds you need some rest ... some slow down ... this aint no fun, not at all, but listen to your body.

I cross mmy fingers for you - hopefully Remicade kicks in soon and gets you back into remission and on the road sooner than you think.

Feel well dear
 
Oh no, Kev...I'm so sorry to hear that :( You've been the LDN pioneer for this forum, and if it weren't for your posts, we'd have been more skeptical....but the fact that you lost remission is not good at all. However, if it brings comfort, I think losing remission can happen with any medication, even the Biologics. Does your doctor say it's progressed, or that this flare may have been less had you been on another medication? I pray and hope that you have a speedy rebound, and that LDN will once again fix your immune system into shape!
 

Kev

Senior Member
Actually, if I had to put money on it... I'd place the blame on C. That was the one thing, the one variable "I" had direct control over. I 'could' have stuck to my diet, I could have (although the side effects from it was pretty nasty) kept taking the 5-ASA.. I could have lived my life KEEPING in the front of my mind that I HAVE an incurable disease. I guess my point is... for those of you on 'steady' ground... don't make the same mistake as me.

Don't let your guard down... Believe me, you don't want to flare if you can avoid it, OK?
 

Orchid

Banned
At least in my experience with Crohn's once you're in remission diet can go back to normal. I've gone back to my life of greasy food covered in chillisnob hot sauce, seedy breads, and alcohol and all my inflammation markers are still negative. I have to wonder if you were ever really "on solid ground", then again Crohn's Disease is a very individualized illness and this could be really unfair to you and your life experience but on the other hand being expected to change your diet like that can be really hard, I can see why you faltered.
 
Kev I think there is still huge hope for you with LDN. According to Dr Zagon it is possible for long term ldners to accumulate the drug in the system and this can cause difficulties

"However, when you take LDN over extended periods, some Naltrexone will accumulate in the system and this can become troublesome. It can perhaps even prevent LDN from working well. It seems a blockade lasting longer than about 6 hours may stop the LDN working and can even make it work in the opposite direction. This can be remedied by skipping a day – even two days in extreme cases but no more than that! This will help reduce the accumulated level of naltrexone. Much research is needed here and naltrexone residual level monitoring equipment would help too"

ldnnow.co.uk/8601.html?interval=2009-06 (sorry I cant send links - reason: you are only allowed to post links to other sites after you have made 10 posts or more)

I was diagonsed with AIH 11 years before, but im sick much longer. Im on 100mg 6 mercaptopurine and 12mg prednisone + other stuff for osteoporosis (high lvl of vit. D3 from suplements). I have never stopped taking prednisone or 6mp. I will try LDN for sure with liquid form - my goal is to get rid of steroids. 50mg naltrexone + 50ml water or maybe 25mg (half dose) + 25ml of water - I guess it will be fresher :) I will do it myself because I don't trust people from pharmacy, and here in Europe we have only 50mg naltrexone.

Could someone send me a link to that "Norwegian documentary" about ldn?

Ps. sorry for my english it's a foreign language for me.
 

Tesscorm

Moderator
Staff member
Just saw these recent posts...:( So sorry to hear, Kev. Hope you are doing better and the remicade is working well! :ghug:
 
Sorry to hear the LDN quit working. I was fine for a couple of years on it, then a bout of pneumonia and that ended my good ride.

Doing good now though. You will get there also.

Best regards.

Dan.
 

Kev

Senior Member
Well, it is over 4 months since my relapse, and it is still not under control. An experimental dose of Remicade (10 vials) a week and a half ago hasn't worked any magic. If it doesn't turn around soon, then the only option left will be an ostomy. Not keen on that prospect.
 

nogutsnoglory

Moderator
So sorry Kev, I was always very impressed and grateful for your contributions here on LDN. I sincerely hope remicade kicks in or doctors find a solution so you can avoid an ostomy. In health my friend.
 

Kev

Senior Member
Well, life doesn't always give us what we want. Whatever the outcome, it is what it is. The upside of ostomy (if it goes that route) is that the daily pain I've dealt with these past years should go away, and that run in I had with colon cancer will be just history.
 
Before you do the ostomy, you should give my alternative treatment a try. It can't do any harm, and it brought me straight out of a flare.

It's up to you, but I wish you luck either way.

Dan
 
Hi Kev
long time reader of this forum, sorry to hear your crohn's had a relapse, and I wish you and yours all the best in the future, I am hoping to quit Rem and start LDN with SCD towards the end of the year and if I was to do aswell on it as you have I would be very happy,,
Thanks for keeping us posted and I hope you recover quickly

All the Best
Cleg
 

JK2015

Banned
Hi Kev

Not sure if you are still paying attention to this post.

Just want to say it could be the fact that you stopped smoking that triggered the flare.

Research has shown that smoking can help immensely with IBD - Esp Ulcerative Colitis and sometimes with Crohn's Disease, not great with other things of course but that's another can of worms.

And of course, the cessation of smoking takes away the IBD benefits.

Cheers
 

Jmrogers4

Moderator
According to a report in the April issue of Gastroenterology, quitting seems to snuff out the painful flare-ups of this inflammatory bowel disease, a disease that is not only associated with pain, but also with diarrhea, abdominal cramps, fever, fatigue, and rectal bleeding.

"This is the first study to demonstrate that modifying smoking behavior in Crohn's disease patients can actually improve the long-term course and reduce the number of flare-ups when patients stop smoking," Stephen B. Hanauer, MD, tells WebMD after reviewing the study.

In general, smokers with Crohn's disease have more severe disease. Smokers are less likely than nonsmokers to get better with medications, and more likely to get worse after surgery to remove the involved section of intestine, says Hanauer, professor of medicine and pharmacology and director of the section of gastrointestinal disorders and nutrition at the University of Chicago Hospital.
https://www.crohnsandcolitis.com.au/about-crohns-colitis/living-with-inflammatory-bowel-disease/smoking-and-crohns-disease/
Researchers have known for a long time that people who have Crohn’s disease are more likely to be smokers but that didn’t prove that smoking caused or worsened Crohn’s disease. Over the years the evidence has been mounting and now we can say without any doubt that smoking worsens Crohn’s disease.

If you are a smoker, the good news is that giving up smoking is as good as taking medicine to stop it from coming back. Quitters have a 65% lower risk of flare-up than continuing smokers. That is the kind of benefit conferred by drugs like Imuran.

That is worth repeating – if you give up smoking, the benefit is as great as if you take medications to stop the disease from flaring up again. Put another way, you are less likely to need steroids or other immunosuppressive medications if you give up smoking.
This study as well http://www.ncbi.nlm.nih.gov/pubmed/1624159

Smoking and Crohn's do not mix.
 
Hi Guys
Just a quick update
I have started LDN last 3 weeks I got (hopefully my last) Remicade infusion last week, I had been feeling great untill that point and with just some minor sleep issues the LDN was settling fine

Since Rem infusion my gut has been quite sore and some D, I have informed hospital that I was going to try LDN despite the risks and quit Rem

I will go back to them in 6 weeks to give stool/blood samples and then we will have to wait and see

In 2 years Rem has stabilized my gut but has taken so much out of me and has done nothing to help my fistula

Wish me luck :)
 
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