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


 
05-19-2014, 09:23 AM   #31
MamaHenn
 
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Hoping the steroids do the trick. Please do keep us posted.
05-19-2014, 05:29 PM   #32
Kev
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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.
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
05-22-2014, 07:41 PM   #33
MamaHenn
 
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Any updates?
05-23-2014, 04:26 AM   #34
Kev
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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.
05-27-2014, 04:42 AM   #35
HelenMelb
 
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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-bo...y-bradley-show

Wishing you a very speedy recovery

Helen
05-27-2014, 06:45 AM   #36
Kev
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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.
05-29-2014, 02:31 PM   #37
Kev
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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.
05-29-2014, 03:15 PM   #38
HelenMelb
 
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Good luck Kev. Look forward to hearing that things are improving for you.
05-30-2014, 12:48 AM   #39
Searchingforhealth
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I hope you are feeling better soon and please keep us all posted on your progress.
05-30-2014, 12:40 PM   #40
Kev
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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!
05-30-2014, 01:10 PM   #41
Jmrogers4
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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.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-30-2014, 03:49 PM   #42
HelenMelb
 
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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!
05-31-2014, 12:39 PM   #43
superzeeman
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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.
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05-31-2014, 12:48 PM   #44
TonyaS
 
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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
05-31-2014, 04:35 PM   #45
joie de vivre
 
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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.
05-31-2014, 04:38 PM   #46
joie de vivre
 
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Kev, just caught your update from yesterday. Great news!
05-31-2014, 06:02 PM   #47
Searchingforhealth
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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.
05-31-2014, 07:45 PM   #48
Kev
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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.
05-31-2014, 11:47 PM   #49
Sea_Star
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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!!
06-01-2014, 12:53 AM   #50
HelenMelb
 
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.....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/uplo...n-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.
06-24-2014, 03:59 AM   #51
Kev
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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
06-24-2014, 04:15 AM   #52
Orchid
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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.
06-24-2014, 04:56 AM   #53
HelenMelb
 
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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.
06-24-2014, 09:05 AM   #54
MamaHenn
 
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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.
06-24-2014, 09:30 AM   #55
TonyaS
 
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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!
06-24-2014, 11:56 AM   #56
Johnnysmom
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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
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06-24-2014, 12:04 PM   #57
Jmrogers4
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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.
06-24-2014, 03:13 PM   #58
worriedboy
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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
06-24-2014, 04:19 PM   #59
Sea_Star
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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!
06-25-2014, 07:35 AM   #60
Kev
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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?
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