Anyone here ever try LDN (Low Dose Naltrexone)?

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killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 8/28/2007 8:39 PM (GMT -7)   
UPDATE: I found the following user reviews of LDN:

http://www.revolutionhealth.com/drugs-treatments/rating/naltrexone-for-crohns-disease



http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

I was just reading about this at http://www.lowdosenaltrexone.org/ldn_and_ai.htm and thought I'd ask. I do remember reading a post here or there but can't say if it was this board or not. It seems a very intriguing approach as it boosts rather than suppresses the immune system. Anyway, just curious and thought I'd ask. - Jamie
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.

Post Edited (killerzoey) : 9/1/2007 3:37:12 AM (GMT-6)


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 8/29/2007 7:41 AM (GMT -7)   

Quite a few of us have tried it. For some it helped, others, not. Do a search and you will find some threads.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Eye is healing and currently taking Entocort counting on the residual (non-systemic portion) treating the eye. In October if eye is stabilized, will need cataract removal (obviously old steroid associated). Then surgey to the back of the eye to remove scare tissue caused by the detachment. The upside? Right now I only have to clean one side (lense) of my glasses.
Married with 4 grandkids.


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/29/2007 8:57 AM (GMT -7)   
I think I have seen some reports that the initial clinical trials are not promising.

ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 8/29/2007 11:25 AM (GMT -7)   
I just posted a message in reply to this thread - check it for our exp
with LDN.
http://www.healingwell.com/community/default.aspx?f=17&m=888836

killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 8/29/2007 12:35 PM (GMT -7)   
Thank you, ana-e. And I am so glad to learn that your daughter is doing better.

I must be doing searches wrong because before I posted this inquiry I did a search for 1 year back on both LDN and Low Dose Naltrexone but got nothing!
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 8/29/2007 2:00 PM (GMT -7)   
killerzoey,


nope, haven't started yet, but I've got the meds. Have to taper my prednisone, so within 18 days from now, I'm ready to kick in tongue Low dose naltrexone is a med without sideeffects, even children can use it.....there has been some minor sideeffects like lively dreams the first week, but more than 50 % do sleep very good and have no sideeffects. yeah
From Ingrid

Post Edited (Skjura) : 8/29/2007 3:02:28 PM (GMT-6)


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 8/31/2007 7:42 PM (GMT -7)   
Good luck Skjura, and please keep us informed of your experience with LDN!

BTW, have you seen this forum? It seems like it's mostly run by a woman named Brenda who answers lots and lots of questions. Most of the people there seem to be using it for MS. But it has much good info on which compounding pharmacies do a good job with preparing the drug, and which doctors might do phone consults for a script should someone be unable to find a willing doc nearby.

http://ldn.proboards3.com/index.cgi?board=forum
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 9/1/2007 2:40 AM (GMT -7)   
I just posted an update on my original post at the top, with a website of user reviews of LDN for Crohn's.
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 9/1/2007 2:56 AM (GMT -7)   
Thank you, killerzoey,
it sure will be interesting to find out how LDN works on me. Yesterday I found a TV "documentary" - an intervju (sp?) with dr. McCandless. She has done a research on Autism and LDN. Exciting results on those kids having Autism and eating LDN!!!! This pill sounds like a "one pill cure all-pill" that one too often find in healthstores or on the internet, but it certainly isn't. LDN is working with the immunesystem, and it is actually making a balance between the natural killer cells Th1 and the help cell Th2.

I had a look at the link you pasted up here, and have been reading a lot in it now. I have found an interesting link there too, look at this one: (it's about homocysteine, the amino acid that could make your immunsystem go bananas and your body break down)....

http://ldn.proboards3.com/index.cgi?board=celene&action=display&thread=1146697945

From Ingrid
PS
Remeber to give LDN a chanse to work for 6 months or more before you give it up. It can not be taken with prednisone or other steroids.

killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 9/1/2007 3:48 AM (GMT -7)   
That's interesting. I was just looking at a supplement somewhere that was aimed toward lowering homocysteine levels. I thought "what's that?" Now I know!
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 9/3/2007 3:04 PM (GMT -7)   
Here's a link to a bunch of info that I barely understand, hoping that someone else might . I can only discern that it is probably very interesting. tongue

http://www.groupsrv.com/science/post-1868319.html
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning, gastritis symptoms, horrible right hip and low back pain.

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