Just got my doctor's take on LDN

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Carnival Huckster
Regular Member

Date Joined Oct 2009
Total Posts : 159
   Posted 11/10/2009 9:11 AM (GMT -7)   
What do you think?  It sounds like my doctor doesn't have her facts straight -- at least when it comes to LDN.  She has otherwise been an excellent GI.  Thoughts???
Unfortunately I don't have experience with prescribing Low dose Naltrexone for Crohn's.  If that is something we determine to be a possibility for you, then I would send you to the research medical center to see if they have any recommendations for it.  Also, Naltrexone only reduces symptoms and does not do anything to reduce the underlying inflammation that is the issue with your Crohn's.

+ 34 year old male
+ Moderate-to-severe Crohn's Disease DX in 1997
+ Currently taking 9mg entocort
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, and Multivitamin
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems
+ No surgeries so far

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/10/2009 10:14 AM (GMT -7)   
Well if anything, in my opinion, she is not familiar with LDN. This is a relatively new possible treatment for Crohns, so I personally am not surprised she doesn't know much about it. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 11/10/2009 10:30 AM (GMT -7)   
Doctors have to rely on the published medical literature in advising patients. So far, with only one published pilot study of naltrexone in Crohn's, no one really knows what the straight facts are, and any hypotheses that it could reduce inflammation are for the moment purely speculative. Her comment, therefore, sounds like that of an excellent GI to me. There are so many treatments that look promising on early investigation, but then fail to produce significant results. Doctors and scientists are trained to assess the quality of the evidence and avoid prescribing products until it is clear that the potential benefit is greater than the potential harm.

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 11/10/2009 11:02 AM (GMT -7)   
I agree with writer. IIRC, the LDN study involved only 10 patients! I know that a few people here have reported benefits, but you can't really expect a GI to start recommending a drug based on anecdotal experience from the internet.

I'm not saying LDN isn't worth a shot, just that I see where your GI is coming from.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.

Go Saskatchewan Roughriders!

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/10/2009 12:06 PM (GMT -7)   
Have there been any realiable testing done with LDN yet or is it just that one test?  Also, from what I have read, the FDA still hasn't approved LDN as a treatment yet..so that says a lot.  Also, does anyone know the long term affects of the drugs and what it can cause dwn the line?

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Veteran Member

Date Joined Oct 2008
Total Posts : 1343
   Posted 11/10/2009 12:17 PM (GMT -7)   
There are several trials for LDN going on now. Penn State is doing 2 for crohn's: http://www.ldninfo.org/ldn_trials.htm.

*activated your link*

Post Edited By Moderator (Nanners) : 11/10/2009 1:23:09 PM (GMT-7)

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 11/10/2009 3:09 PM (GMT -7)   
"Purely speculative"?? Actually,  not speculative at all...the clinical trial showed LDN DID reduce inflammation - in fact, corroborated by lab tests and colonoscopy which showed that it not only reduced, but eliminated inflammation, resulting in mucosal healing.  Unlike Entocort, which reduces (but does not necessarily eliminate) inflammation, but does NOT appear to induce mucosal healing.
I wouldn't say your GI isn't good just because she trusts traditional meds more, and has not had time to read the published LDN results. There is no need to rely on "anecdotal evidence" from the Internet -- the trial was well documented and published in the American Journal of Gastroenterology. I downloaded the published clinical trial and handed it to my daughter's docs. 
As for FDA approval:
a) the FDA is slow -- didn't approve budesonide (Entocort) until more than a decade after it had already been used extensively for Crohn's in Western Europe and elsewhere.
b) because naltrexone is an orphan drug, pharmaceutical companies are not going to make a pile of money on it, so it is not worth their while to run or fund clinical trials using LDN...which, in turn, slows down FDA approval. 
Furthermore, the FDA has never approved any mesalamine (Pentasa, Asacol, Lialda) for Crohn's...these meds are FDA approved only for ulcerative colitis. It has never approved Flagyl or Cipro for Crohn's. Azathioprine (Imuran) has been around for ages, but has never been FDA approved for Crohn's. What does that tell you? That FDA approval certainly is not a prerequisite for using even standard traditional meds.
Yes, people do know the long-term effects of naltrexone at a high dosage...for instance, 50 mg. The lower dosage or 4.5 mg is thought to result in little or no side effects...docs have been using LDN off label for Crohn's, MS, and other conditions for years and have not reported any side effects other than those uncovered in the clinical trial. What has not been evaluated fully is how long LDN, if it works, can keep a patient in remission. And like any med, it doesn't work for everybody. 
I often think of the mantra "First, do no harm" and of how traditional meds fall short. The risks of azathioprine and other traditional meds are substantial: immunosuppression, lymphoma, bone marrow suppression, neutropenia, etc. They ALL attack symptoms, but do not cure Crohn's (because of course we don't know what causes Crohn's). If recent research, gaining traction, turns out to be true -- that Crohn's patients have underactive immune systems, then this means we have really been on the wrong track in using meds that suppress the immune system. 
LDN does not suppress the immune system and its side effects pale in comparison to those of traditional meds. I don't expect any doc to recommend LDN but I do expect docs to cooperate with patients who have done their homework, are informed about the risks (mainly the risk of it not working), and want to try it, anyway.

Carnival Huckster
Regular Member

Date Joined Oct 2009
Total Posts : 159
   Posted 11/11/2009 7:48 AM (GMT -7)   
I agree with njmom: there IS enough evidence (scientific and otherwise) that LDN should be worth trying, especially for Crohn's. Also my doctor was just plain wrong about the inflammation if, in 67% of cases, the patients went into remission that means that 67% of patients therefore could not have imflammation because they went from having active disease to remission. 89% of patients showed improvements. Given those kind of numbers -- with relatively little downside -- it would seem like a no-brainer to not at least try it!

+ 34 year old male
+ Moderate-to-severe Crohn's Disease DX in 1997
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, and Multivitamin
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems
+ No surgeries so far

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