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Crohns & MS
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 5/1/2009 1:32 PM (GMT -6)   
I have had Crohn's and MS for a few years now and am not responding to my current Crohn's treatment.  Because of my MS I am limited on what I can take for my Crohn's.  Immuran is no longer working and I can't do any of the Remicade category drugs.  I have been to see my doctor and to the Cleveland Clinic but neither talked about LDN.  I have recently read some information on LDN and was wondering if others are taking it for Crohn's and/or MS?  Why is this drug not talked about more?  I would like to talk to my doctor about it and I have done a little research on the internet about it but was wondering what others experiences are with it (anything bad about using it - it always seems there are bad side effects for the drugs I need to take).
 
Thanks,
Katie

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 5/1/2009 2:05 PM (GMT -6)   

The only side effect I've heard reported is, for some, some sleepless nights as the body adjusts to the LDN. Also some vivid dreams.

The link below takes you to the more info about LDN:

http://www.lowdosenaltrexone.org/  



Daughter (21) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past few years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. On Entocort since April 06. Never had D. SCD multivitamin, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, occasional B12 shots, fish oil capsules. SCD diet modified to include potatoes and rice. 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/1/2009 3:08 PM (GMT -6)   
Hi C&MS! In case you didn't see my other post, the second best place (after the one njmom gave) to get information on use of LDN is the yahoo group for LDN users. The people there are very helpful and they can give you information on how to get it yourself if your doctor won't agree to prescribe. They can also tell you which form is more appropriate for your situation (cream or capsule), and many other helpful hints.

My impression from reading posts on the yahoo group is it seems like more and more doctors are willing to prescribe it--at least for MS! Not many people there who live in the US have difficulty getting it. I would try it in a heartbeat for my son if he was having issues.

Possibly the reason the drug isn't talked about more is because it is still in trials for CD and because current prescribing of LDN for Crohn's is considered "off label". Some doctors just won't consider prescribing off label due to possible lawsuits. Another possible reason it is not prescribed more is because it is so cheap and therefore does not get promoted like other, high profile drugs. Drug companies make virtually no money on LDN.

There are a few LDN users who are members here. I hope they'll see your post and respond. :-)
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 818
   Posted 5/1/2009 5:05 PM (GMT -6)   
What about Tysabri that is both for crohn's and MS
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 5/1/2009 11:00 PM (GMT -6)   
Most mainstream doctors don't prescribe it because it has not been thoroughly tested. There is another problem though. Since it is an immune booster, it could potentially accelerate the autoimmune attack of your system. There was one post in another thread by someone who used LDN and had to be hospitalized after about 3 (?memory gap?) months with major bleeding. There is a random possibility that it might cure the disease - impossible to say how likely it is - if using LDN results in a strong TNF reaction to the illness. But that is just pie in the sky - there is no evidence supporting that idea.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 5/2/2009 12:15 AM (GMT -6)   
Most mainstream docs don't prescribe it because they don't have a drug rep in their office pushing it. Naltrexone has been fda approved since the 80's. There is no pharma interest in it because the drug is already available and at a low cost.
Intelligent open minded docs seem to be pretty easy about prescribing it. It has minimal side effects and can be taken along with other meds.

Some of the MS results have been astounding, and the Crohn's results, as published so far, were great enough for my GI doc to actually be excited for me to take it. I think this would be a great option for you to consider, and if you're motivated, I'm sure you can find a doc to help you.

As far as evidence goes, I'm not too sure exactly what the previous poster was getting at, but I thought I'd get you started with this:

> LDN for Crohn’s disease—Penn State College of Medicine, Hershey, PA

Dr. Jill Smith’s original article, "Low-Dose Naltrexone Therapy Improves Active Crohn’s Disease," was published in the Jan 11, 2007 online edition of the American Journal of Gastroenterology (2007;102:1–9) [print edition Apr '07]. This was the first clinical study of LDN published by a US medical journal. Dr. Smith, Professor of Gastroenterology at Pennsylvania State University's College of Medicine, found that two-thirds of the patients in her pilot study went into remission and fully 89% of the group responded to LDN treatment to some degree. She concluded that “LDN therapy appears effective and safe in subjects with active Crohn’s disease.” That open-label Penn State trial demonstrated the efficacy of LDN in a small group of patients.

As a result, Dr. Smith received an NIH grant that permitted a more definitive Phase II placebo-controlled clinical trial, which by September 2008 had already studied almost all of the 40 patients it plans to include. With just a few patients yet to be added to the study, Dr. Smith is very optimistic about the usefulness of LDN in inflammatory bowel diseases, such as Crohn’s disease. (See the trial website.)

Dr. Smith’s most recent research on the effects of LDN is a double blind placebo controlled Phase ll study of youngsters from ages 6 to 17 with active Crohn’s disease. It was launched at Penn State in July 2008 and is expected to run until July 2010. Participants “will be treated with either naltrexone or placebo for the first 8 weeks then all subjects will receive active naltrexone drug the last 8 weeks.” For information about joining the trial, contact Sandra Bingaman, RN, at 717-531-8108 or sbingaman@psu.edu. (Please see the trial website.)

And:

Low-dose naltrexone therapy improves active Crohn's disease.

Smith JP, Stock H, Bingaman S, Mauger D, Rogosnitzky M, Zagon IS.

Department of Medicine, Pennsylvania State University College of Medicine, Hershey, Pennsylvania 17033, USA.

OBJECTIVES: Endogenous opioids and opioid antagonists have been shown to play a role in healing and repair of tissues. In an open-labeled pilot prospective trial, the safety and efficacy of low-dose naltrexone (LDN), an opioid antagonist, were tested in patients with active Crohn's disease. METHODS: Eligible subjects with histologically and endoscopically confirmed active Crohn's disease activity index (CDAI) score of 220-450 were enrolled in a study using 4.5 mg naltrexone/day. Infliximab was not allowed for a minimum of 8 wk prior to study initiation. Other therapy for Crohn's disease that was at a stable dose for 4 wk prior to enrollment was continued at the same doses. Patients completed the inflammatory bowel disease questionnaire (IBDQ) and the short-form (SF-36) quality of life surveys and CDAI scores were assessed pretreatment, every 4 wk on therapy and 4 wk after completion of the study drug. Drug was administered by mouth each evening for a 12-wk period. RESULTS: Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline 4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P < 0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients. CONCLUSIONS: LDN therapy appears effective and safe in subjects with active Crohn's disease. Further studies are needed to explore the use of this compound.

---
also some of the folks above suggested taking a look at http://www.lowdosenaltrexone.org/

I found the conference videos covered MS quite a lot.

All the best in your quest for a cure!!

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 5/2/2009 1:01 AM (GMT -6)   
Darn! A treatment that is safe and effective! I wonder how long it will take for the treatment to replace existing therapy? Just from the side effects perspective, LDN should replace all existing treatments as a first line of treatment at the very least. I guess that the report in the other thread was from one of the 11% who did not get a response to the treatment.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/2/2009 7:21 AM (GMT -6)   
LDN can not be taken will ALL other medications. You can not take it with narcotic pain relievers. Personally, I have too much pain everyday and at a level that tylenol doesn't touch that I can't/won't go with out them to try something that MIGHT work, but might not. From what I have read, LDN can cure everything including all the AIDS cases in Africa and at the cost of just about nothing it is so cheap. If all the hype is true, why hasn't it been done?
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 5/2/2009 9:42 AM (GMT -6)   
Keeper: There are some people, like me, who canot take 5ASA's because of allergies, and cannot take Biologics because of preexisting infectious conditions. There are people with MS who have clearly benefited from it, as there are people with Crohn's. 5ASA's did WAY more damage to me than LDN can. I don't get the hostlility.

It's a valid therapy for people to try. For some it works very well, for others not so well. Show me a current pharma non-ldn drug that beats that efficacy profile for everyone. WHy so negative about LDN?

Yeah, it's scarey to go opioid free for those who are able. People that try LDN are a courageous bunch -- and they've done their research and are willing to try it.

Why knock it?

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 5/2/2009 4:50 PM (GMT -6)   
LDN cannot be taken with narcotics. Narcotics and LDN are both using the same receptors in the brain. So if you're using LDN and narcotic pain meds one or the other will not work at all.

I am using LDN, and the medication have been working perfectly well for me for almost 2 years now. I am avoiding food triggers as sugar and avoiding eating too much wheat products. Have found that both are irritating my system.

If you have MS and Crohns LDN could be a great medicine for you. 85 % of those with Crohns is getting improvements (due to the pilot of dr. prof. Jill Smith, Penn State) /see www.ldninfo.org, those with MS should look at www.ldners.org

LDN stops the progression of those with MS, this means that their disease won't get any worse, it stops at one level. As an extra bonus you may find that LDN will give symptom relief too, the relief could be less pain, better bladder functioning, better balance.

And, there is an ongoing trial in Mali Africa on LDN and Aids, led by Dr. Jaquelin MC Candless. Since LDN is working by increasing the endorphins, the beta enkephalins, the MOR endorphines and some other - ines in the immune system, you will find a lot of interesting results in quite different diseases. Why not read this:
http://jeffreydach.com/2009/04/13/low-dose-naltrexone-ldn-2-jeffrey-dach-md.aspx

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 5/3/2009 8:06 PM (GMT -6)   
I took LDN for 16 weeks. I may have seen modest improvement, but nothing earth shattering. I did converse with the doctor doing the study at Penn State (Dr. Jill Smith) who was very helpful. It's cheap and it needs to be compounded. I just didn't see a whole lot of improvement.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Canasa (1000mg): 1 suppository nightly

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