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12-10-2012, 07:13 PM   #1
JDTM
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Starting LDN!

Hi folks! Haven't been posting a lot lately, but I've been lurking on the forum and checking up on various research articles and treatment threads here and there. That said, I think this warrants a new post! Tonight, I'm starting LDN. I'm hoping it'll do right by me, and I plan on posting about my experiences with it here.

I'm actually sorta excited to try it out... it's still pretty early on in the evening here, and I kinda wish it was closer to bedtime! That said, I'm hoping that I manage to sleep tonight!

Wish me luck folks! :D
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
12-10-2012, 07:26 PM   #2
Avw
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I just started LDN about 3 days ago as well. Can't wait to see if it will work! Although, did have my first negative experience with the "vivid dreams" side effect, but if all I have to worry about are bad dreams every now and then, I'll take it!
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Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
12-10-2012, 07:42 PM   #3
D Bergy
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Best of luck to you both.

I look forward to hearing about your experience. I always liked the dreams, but they went away pretty quickly.

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
12-10-2012, 07:46 PM   #4
JDTM
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Very cool! Hopefully they'll be cool dreams and not ultra-vivid nightmares, if anything. We'll see.

If anyone out there has any pointers/suggestions/recommendations, feel free to chime in. I'm sure I'll have questions in the coming days.
12-10-2012, 07:47 PM   #5
Avw
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Well, it wasn't necessarily a BAD dream. Just weird and exhausting. When I finally managed to wake myself up, I felt like I had aged 20 years in two hours. Of course, dreaming about not being able to find your daughter tend to be exhausting (as do daughters)! lol
12-10-2012, 10:35 PM   #6
David
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Jesse! Dude! I'm really excited for you I pray LDN is everything you hope it is, and more. You're an amazing person and deserve nothing but the best. Thank you for keeping us updated. I look forward to your future posts in this thread.

I know your Crohn's has been, "mild" symptom wise in the past. What, if any, symptoms have you been experiencing?
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12-10-2012, 10:53 PM   #7
Jmrogers4
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Very exciting for you both, all I can say is from Jack's experience is the first week was grand 2-3 week, not so much but we kept going and we have had such fabulous results we are 1/2 through the 6th month and he has not felt this well since before he was dx'd (his words) It is nice to see him acting like a 13 year old boy - well most of the time. I'll still take it over the pale, lethargic child he has been the last couple of years.
Very nearly gave up in that 3rd week but just as I was getting ready to call the GI he turned the corner and has been good ever since. In fact this is the first year he has not missed any school due to his gut. Hurry somebody give me a piece of wood to knock on.... We only have a few weeks left of 1st semester so keeping my fingers crossed.
He has also not felt all the joint pain that has been a big problem the last couple of years.
Hope it works as well for you as it has so far for him and please keep us updated on your progress
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Jacqui

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
12-11-2012, 06:53 AM   #8
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Thanks everyone!

Glad to hear it's working so well for Jack!

David, I'm kind of in a good place to start. Symptoms have gone WAY down since I was first diagnosed, but I still have the occasional pains in my gut, both above and below the belt. Nothing absolutely crippling, but enough to notice and to remind me that I have Crohn's (not that the 8 Pentasa a day isn't enough of a reminder). I would call this remission in that I can function normally and live my life, but after reading what I've read on here, I'd like something that can potentially help me further, and I'm not super comfortable with only being on Pentasa, despite the fact that I feel like it is helping me to a certain extent.

Side-note: vivid, crazy dreams. Not cool. Some of it was alright, sure, but some of it crossed into nightmare territory. Yeesh.
12-12-2012, 09:22 AM   #9
karend77
 
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New to forum, but wanted to post that LDN has worked extremely well for college son with Ulcerative colitis for over a year now. It did take time to "kick in" (average time is 3-6 months). He takes no other pharmaceutical drugs, has altered his diet and takes probiotics and boswellia. He likes feeling "normal" again.

This doesnt mean you won't have a bad day. He will have occasional days that are "mini flares" from stress (like finals week this week) but still very managable.

Note- you can start as low as 1.0 mg and work your way up to 4.5 mg. Recent studies from Dr Jill Smith indicate 3.0 mg might be all you need. Some people's metabolism is slower than others so they take it every other day, so don't be afraid to adjust how you take it to your specific body. If you have absorption issues try transdermal cream. Ask the pharmacy to compound it with emu oil, as it is non-allergenic and absorbs quickly into the bloodstream.

If you are in the UK this is a great website - ldnnow.co.uk
12-12-2012, 09:27 AM   #10
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Night two -- don't think I slept super well, but I also don't remember any crazy dreams, so that's good. I realize that this takes a while to "kick in" for many, so I probably won't have too much to report for a while. Still, I'll keep you all posted if I notice any significant positive or negative changes.
12-12-2012, 09:30 AM   #11
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Jesse, what dose of LDN are you on? 4.5mg?
12-12-2012, 09:45 AM   #12
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Yep, just went ahead and started with that. I'm a big boy (about 200 pounds), so I wasn't too worried about the dose being too high. I've fortunately managed to maintain the same weight since I got down to 200, which is fine with me. (Previously, I was about 250 -- and even though I'm feeling better, the weight hasn't really come back, which is great. That's the funny thing about Crohn's and weight loss when you're overweight to begin with, when someone hears you have IBD: "Oh man, that's terrible... But, y'know, you LOOK great." Uhh, thanks, I think? )
12-12-2012, 09:51 AM   #13
karend77
 
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JDTM - my son was the same as you. Needed to lose some weight (he lost 60 pounds) and hovers between 190-200 now. He got the same comments. This wasnt exactly the way he wanted to lose the weight though
12-12-2012, 07:38 PM   #14
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Man, great news. BTW... I miss, I really MISS... those dreams.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
12-12-2012, 10:47 PM   #15
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Karen -- sounds like your son is EXACTLY like me. I was around 200 lbs. as a freshman in college, and as the years have gone by, my weight fluctuated (well, went up, mostly) quite a bit. I knew that I wanted to lose weight and whittle myself back down to around 210 or so... and while I'm glad to be back to a "healthy" weight, IBD was certainly NOT what I had in mind.

Kev -- just took my third pill. Here's hoping that any more dreams (if they continue) are good ones! Job/life stuff has got me pretty stressed as of late, so I'm guessing my brain was just acting out the other night. Weird.
12-16-2012, 10:53 PM   #16
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Howdy folks! Nothing really new to report here, but that's somewhat expected -- I was doing OK in the first place, and I know that LDN doesn't work instantly for most people. Still curious about whether or not I'll notice a tangible difference over time. The dreams seem to have mellowed a bit, which is fine. I've felt a little off over the weekend, but that's my own fault... as I continue to feel better and feel free to eat and drink certain things without immediate repercussions, it's easy to slip back into old habits... I've made a habit of overindulging during the past few weeks, so I need to try to nip that in the bud before the holiday is here. Or at least slow it down a little.

I did have some homemade kale soup with a veggie-based broth, so at least I'm getting in some veggies.

Not sure how alcohol interacts with LDN (not that I should be drinking alcohol anyways); if anyone has any input on that, feel free to chime in.

More updates later!
12-17-2012, 01:42 PM   #17
ctrl z
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I've read where people on LDN that consume alcohol projectile vomit and I've also read that some have no problems at all. You'll have to be your own test monkey!
12-18-2012, 04:19 PM   #18
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I usually don't drink more than 4-6 beers, but I still take the LDN a couple hours after stopping without problems. I take it with a lot of water. However, I still think this may tax the liver--but I haven't read anything concrete on the matter. So I take silymarin the following morning with a bunch of water.

If I drink anymore than that, or delve into liquor, I usually forgo the LDN for one night. Full dose naltrexone can cause liver problems, so I like to be pre-cautious. Honestly, I haven't looked into it enough to know for sure.
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12-18-2012, 04:25 PM   #19
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Interesting read -- a quick search of "ldn liver" yielded this result, from the Skip's Pharmacy website:

http://www.skipspharmacy.com/wplog/p...urt-the-liver/

Thanks for responding!
12-18-2012, 04:40 PM   #20
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Thanks for posting JDTM. Although my son is not of the age to drink (and better not be now) we do like to keep him informed of the issues that could arise from other drugs and alcohol due to his meds and the Crohn's and that he needs to make informed decisions
12-23-2012, 11:19 PM   #21
Avw
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Hi! Just wanted to check in and see how the LDN is working so far for you all?

I was scared to get my hopes up so soon, but it appears the LDN is actually working quite well for me already. It's amazing, really. I think I'm about three weeks in, and I've only been having 2-3 mostly formed BM's per day, sometimes less! I still have to be careful of what I eat, but at least I can eat things other than crackers and bread most days. I haven't been this close to "normal" in years.

Down to 15 mg of prednisone a day, and normally I would be hospitalized by now at that low of a dosage.

Keeping my fingers and toes crossed that it keeps working for me, this is my last hope seeing as I've hit a brick wall with the insurance refusing to cover the stem cell transplant.

Hope all is well and happy holidays!
12-23-2012, 11:55 PM   #22
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Hey there Avw!

Thus far things have been working out well for me, but I'm still less than two weeks in, and I was doing pretty OK to begin with. I would like to say that I'm doing better, but I'm not sure if that's just because I was in a good place to start with, and I don't want to jinx it. I could be imagining things.

I hope that if (when?) I do flare again, budesonide will help take care of it; I'm glad to hear that you are doing well on a lower dose of prednisone, and I'm also happy to hear that LDN and corticosteroids can coexist if needs be. I hope that LDN helps you taper off of prednisone, and that you continue to feel awesome through the holidays and beyond! Here's to an amazing 2013!
01-14-2013, 09:23 AM   #23
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One month in! I'm feeling pretty OK for the most part -- yesterday was a bit rough, but that's my own fault (friend's birthday celebration = a bit too much booze). Strange dreams have largely subsided, and there are no other side effect issues to be reported.

I'm still a little unclear on the optimum time to take my pill; most nights, between 9-11 is pretty normal, as I just pop it before I go to bed. However, on the occasional night that I'm out late (hanging out with friends, playing a gig, etc.), I haven't stuck to that strict of a time schedule, and I'll still take it when I get home before I go to bed, even if it's after 2:00AM or so. Not sure if that has any effect on anything.
01-15-2013, 10:17 PM   #24
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Alright... here's where I'm hoping that this is just a little bump in the road, or the "when-you-take-LDN-it-sometimes-gets-worse-before-it-gets-better" phenomenon that I've read about on here. Kinda had a rough start to my day and even had to duck out of a training session at work for a few minutes because of cramping and urgency. Mercifully, that was the last of the issues for the day, but I couldn't quite figure it out; I wasn't particularly awful in terms of diet the day before, so I don't know what gives. My tummy is a little tender at the moment as well. Hopefully it's just a fluke. In any case, I bought a couple 4-packs of Orgain so I can nurse those if I still feel off-kilter tomorrow.

In other news, I just remembered that I'm only about a month away from my one-year anniversary of being diagnosed with Crohn's!

WORST. ANNIVERSARY. EVER. Amirite, you guys?
01-15-2013, 10:46 PM   #25
ctrl z
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Crappy anniversary!
01-15-2013, 11:05 PM   #26
Jmrogers4
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Crappy anniversary!
01-16-2013, 11:05 AM   #27
Charleigh
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Thank you for starting this thread and for being honest and real I am planning to follow your progress. I have given E's doctor the LDN studies and I am very hopeful to try it. We will see.

Hang in there ~ I have also heard that it sometimes gets worse before it gets better.
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01-17-2013, 10:30 AM   #28
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Very cool! Hopefully they'll be cool dreams and not ultra-vivid nightmares, if anything. We'll see.

If anyone out there has any pointers/suggestions/recommendations, feel free to chime in. I'm sure I'll have questions in the coming days.
I take LDN along with LDA Immunotherapy from Dr Shrader. My experience has been fantastic.

I go off of my LDN on the day that I take my LDA Immunotherapy shot.

My sleep is often interrupted when I re-start the LDN. I have learned that when I re-start LDN, I take it at 3 in the afternoon, and the next day at 6 pm and the next day I finally take it at bedtime.

This works well for me and keeps the LDN from interrupting my sleep.
01-17-2013, 10:31 AM   #29
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Thank you for starting this thread and for being honest and real I am planning to follow your progress. I have given E's doctor the LDN studies and I am very hopeful to try it. We will see.

Hang in there ~ I have also heard that it sometimes gets worse before it gets better.
Anyone can email Crystal Nason who keeps a database of doctors nationwide who use LDN. She will point you to an LDN doctor close to you. [email protected]
01-17-2013, 10:32 AM   #30
scottchopchop
 
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Email Crystal Nason (she has MS) who keeps a database of doctors who use LDN. She will point you to an LDN doctor close to you. [email protected]

Crystal has a few LDN websites
http://crystalangel6267.webs.com/lookingforanldndr.htm
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