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Posted 2/8/2011 12:19 AM (GMT 0)
I am finding clinical studies, as I am sure many of you already have also, that show that Low Dose Naltrexone has in some cases cured several Crohn's cases and put most of the rest in remission. Why oh why hasn't this moved forward and been approved as a clinical treatment instead of the $2000 wonder drug Remicade? It seems to come almost without side effects at all and a study conducted at Penn State showed a completely healed picture of a Crohn's case. I would love to be able to try this for my daughter but of course I would need to have many testimonials first. Does anyone know if this drug is moving to the forefront yet?

Post Edited (Margie63) : 2/7/2011 5:30:43 PM (GMT-7)

Posted 2/8/2011 12:29 AM (GMT 0)
Well the reason it hasn't move forward is most likely because they need to have more/larger studies done and those are mostly funded by pharmaceutical companies. There is no profit to be made in LDN so no pharm co is going to pay thousands for a large scale study. I think the small study done at Penn State was funded by a grant.

There are a few folks on here on LDN, I am one of them. I am doing really well right now, but attribute part of it to diet, part LDN, and part to vitamin D. Not quite what I would call 100% remission, but close. No blood or mucous, only going 2-3 times a day and in the last couple weeks formed.

I am sure some more folks on it will be by with their experiences as well. Some have had mixed reviews. This is the second time I am trying it. The first time I tried to have just LDN as my medicine and I don't think that was enough, now I am still on a low maintenance dose of Sulfa, plus modified my diet and I think all 3 together are working pretty well.

The other thing with LDN is it takes time. It is not like taking other Crohn's med and always seeing an improvement in symptoms right away. It is altering the immune system and healing the body, some have seen results in days to weeks while others it has taken months to see results.

Here is a link to a database that allows patients on LDN to enter their results. There is a link for Crohn's/UC on this website and quite a few patients have rated their experience and if they are following a special diet or using other meds in combination with LDN.

http://www.ldndatabase.com
Posted 2/8/2011 3:37 AM (GMT 0)
Try http://www.ldnscience.org/

it was night and day for me, it didn't work slowly at all. I felt better in a few days,. it's so harmless, everyone should try it first if they can -- rather than last. Like cupcakes says, it's an economic issue - the drug has been okayed by the FDA in much higher doses since the 80's so there's no money in it. My monthly cost is about 35 bucks. If you live anywhere near penn state - go to Jill Smith.

Like cupcakes says -- it doesn't work for everyone, but neither do the biologics. You should search this site, there's plenty of LDN info here. Most of the LDN'ers who get better leave this board - I'm still here because of other issues, so you have to really do have to continue your own due diligence. There's no downside to trying it if you're in a position to try it ie: not in an emergency type flare, and not on a daily dose of opiate-based drugs.
Posted 2/8/2011 4:23 AM (GMT 0)
I'm taking Humira and LDN. I've been lucky enough to have my grandparents live near Hershey Med center where Jill Smith is a Dr, so I see her when I go down to visit them and she prescribes me my LDN. My GI doctor at home did his fellowship under her.

Please me correct me if I'm wrong but from my understanding, or at least I believe Dr. Jill said was right now the FDA or whatever only approves LDN for Crohn's for pediatric use, which is up to 20 years old. But there is a away to get around that.

I can't really say if it has helped a great amount or not yet since I'm still taking Humira, but my small bowel Crohn's is under control with the combination so it isn't doing any harm.

I'm not sure if it's on the website janicea posted but I have the case study .pdf that Dr. Jill Smith sent to me her self that gives information about it. If that is something you are interested in I can send it to you.

// It's late so I'm not sure how helpful I am or if I just rambled. haha
Posted 2/8/2011 2:02 PM (GMT 0)
I would be very happy if you could send me some information. My daughter is 18 so that would be great. She is on 6mp which is an immunosuppressant also, hair loss, loss of appetite and I hate the side effects. Do you have many with Humira? I have just read mostly great things about LDN and thought it wouldn't hurt. The doctors are recommending Remicade since the 6mp does not seem to be holding her all the time. She still has small flares at times.

Good health to you.


Margie
Posted 2/8/2011 4:11 PM (GMT 0)
Just to clarify something you stated Margie, this will NOT cure your daughters Crohns, it may help to get her into remission. We have had many who have tried LDN. It works for some, but not all. We have had some have had to go onto Remicade as the LDN didn't work well enough to quiet the inflammation. As seen here, we have had a few that it did work for. Hugs!
Posted 2/8/2011 5:05 PM (GMT 0)
I started with Remicade and had a year of no issues, and then I started building resistance and other issues that caused me to have to switch from Remicade to Humira. I have no side effects to Humira or LDN. Everyone's individual but there are many who don't experience any side effects, so don't loose hope!

Is there an email address you would like me to send it to?
Posted 2/8/2011 5:10 PM (GMT 0)
It's wonderful to see some people having luck with LDN. I've seen it stated as a drug that can treat UC and Chron's but I haven't seen too many people having luck using it. It's interesting that they said "most" people get into remission with it, from what I have seen it may be more like 50/50. Not that those odds are terrible, I would deifnitely give it a try if nothing was working for me. Maybe I would try it before Remicade even. I hope I don't have to make a decision about that any time soon.
Posted 2/8/2011 6:08 PM (GMT 0)
Just fyi guys DO NOT put your email address on the open forum. Go up above, and edit your profile and put your email there. Hugs!
Posted 2/8/2011 8:16 PM (GMT 0)
My 17 year old son has been on LDN since August 09, he is in remission using a combination of LDN, SCD and hyperbaric oxygen therapy at a maintenance dose.   We started LDN and HBOT at the same time and saw very quick improvement.
Posted 2/8/2011 9:41 PM (GMT 0)
dms40

I'm wondering what hyperbaric oxygen therapy is.  Could someone possibly clarify what that is and how it is helpful for Crohn's?  Thanks!

Posted 2/9/2011 12:24 AM (GMT 0)
Here's another question - I live in the Seattle area.  Does anyone know of any gi doctors who are willing to treat patients with LDN?  I know there is a list somewhere of doctors who will dispense LDN scripts but I'm wondering about gi docs in Seattle in particular.

Also, does LDN need to be compounded?  Thanks.

Posted 2/9/2011 12:48 AM (GMT 0)
My LDN comes from an apothecary, it's compounded.
Posted 2/9/2011 1:37 AM (GMT 0)
Thanks so much everyone for all the useful info. It sounds like most people have to use the LDN as a supplement to other drugs for the most part. The information I read was on a study "Dr. Jill", can't remember her last name now but I could find it and most patients either had improvement or went into remission. I will try to find the link so everyone can read it. bblater.

Clinical Trials in Progress or Awaiting Publication
> 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. The 40 patients completed the study in 2009 and publication is awaited. Dr. Smith intends to make the general results known in an oral presentation during the first week in May 2010 at Digestive Disease Week meetings at the New Orleans Convention Center. She remains very optimistic about the usefulness of LDN in inflammatory bowel diseases, such as Crohn’s disease. (See the "Low Dose Naltrexone Therapy for Crohn's Disease" link here.)

Post Edited (Margie63) : 2/8/2011 6:41:47 PM (GMT-7)

Posted 2/9/2011 1:49 AM (GMT 0)
I have a copy of the full results by Dr. Smith. If I remember correctly a majority of the patients in the study remained on the medicine they were on before the study. The LDN was a compliment to their treatment, essentially made it more effective. I think the only medicine she disallowed was Remicade, you couldn't be on Remicade for the 8 weeks prior to the study starting.
Posted 2/9/2011 2:34 AM (GMT 0)
Thanks so much for the info.
Posted 2/10/2011 9:26 PM (GMT 0)
I would like to get a copy of the study closed in 2010, if it's ok with you, Endeavor08. thanks in advance.

I have used LDN since 2007. LDN is not a cure, but it may bring you in remission. LDN is a very mild medicine, and it increases parts of the immune system.

I used to have severe inflammations prior to LDN, and I got that kind of pain once or twice a month. I got much better the day after my first LDN pill. That was amazing, I used to have pain every day, my tummy was distended (I looked and felt like I was pregnant) and the nauseau and discomfort was too much to carry every afternoon and night. All this was gone after one pill. I needed some weeks to get rid of the diarrhea, from 5 - 6 bathrooms visits to 1- 2 visits every morning. Now, 3 years after, I still have just have none or maximum 1- 2 bathroom visits every day.

If you need to know how other have experienced LDN, please go to

www.ldndatabase.com

you'll find a few people with Crohns or ulceratice colitis and even IBS that is so much better after LDN.
I don't know how many Crohnies on a world basis that is using LDN, but I guess it's not just a little group.

If you go to yahoo.com and register, you will find a lot of LDN groups, one of them is LDN and IBD (Inflammated Bowel Disease), there you will meet people willing to guide you.

The Lowdosenaltrexone group holds a list of prescribing doctors in the States and in UK. You need to write to one of the advocates there and ask for a doctors list. They will not provide the list at the forum, but email you names from your area.

I have read that app. 100 000 people is using LDN for many types of autoimmune disease, diabetes and asthma. It's worth a try, you could always stop using it if you find it doesn't help or fit you.


Anyway, LDN need time to adjust, as a lot of other medicines. And you can use it in combination with other medicines except narcotic pain pills as tramadol and other. Just don't stop using your maintanance medicine. LDN alone may not cover you 100 %. It's still early days due to scientificial researches on LDN. Personally I would prefer using LDN with a mild maintanance drug.

Post Edited (BeeSting) : 2/10/2011 2:39:38 PM (GMT-7)

Posted 2/10/2011 9:44 PM (GMT 0)
Beesting, I sent it to you. : )
Posted 2/10/2011 11:44 PM (GMT 0)
My daughter found out that LDN not only helped with Crohn's, but also her overall health. She seems to resist colds, flu, etc, when on LDN. 
Posted 2/10/2011 11:46 PM (GMT 0)
What does she take along with it? My daughter is on 6mp, 50 mgs. a day but she only weighs 86 pounds at 18 years of age.

By the way, thanks everyone for such helpful information.
Posted 2/11/2011 2:34 AM (GMT 0)
 

  I have been wondering about Low dose Naltrexone in the cream form. My daughter is 10 and she has No outward symptoms ( She just had a colonoscopy and her doctor said she has lymphocyte colitis) I would love to see if the low dose naltrexone would work for her? Do you know if they have studied long term side effects on it? Thanks.

Posted 2/11/2011 3:18 AM (GMT 0)

Margie63 said...
I am finding clinical studies, as I am sure many of you already have also, that show that Low Dose Naltrexone has in some cases cured several Crohn's cases and put most of the rest in remission. Why oh why hasn't this moved forward and been approved as a clinical treatment instead of the $2000 wonder drug Remicade? It seems to come almost without side effects at all and a study conducted at Penn State showed a completely healed picture of a Crohn's case. I would love to be able to try this for my daughter but of course I would need to have many testimonials first. Does anyone know if this drug is moving to the forefront yet?

I found this on the internet:
www.lowdosenaltrexone.org/gazorpa/History.html

Naltrexone in substantially lower doses (Low Dose Naltrexone) is showing great promise as a treatment for multiple sclerosis, Crohn’s disease, AIDS, rheumatoid arthritis, celiac disease, CFIDS, lupus, and certain forms of cancer.

Unfortunately, obtaining FDA approval for LDN will not be a straightforward process. Since naltrexone is now a generic drug, no pharmaceutical company currently holds exclusive manufacturing rights. No company is eager to fund an expensive clinical trial for a drug that will make them so little profit.

However, even without governmental approval or corporate support, LDN is gaining significant grass-roots attention among patients and doctors. The exchange of research information over the internet has greatly accelerated the recognition of the off-label use of LDN.

Post Edited (BabeintheWoods) : 2/10/2011 8:31:48 PM (GMT-7)

Posted 2/11/2011 4:12 AM (GMT 0)
i was reading on this med and it pisses me off that i was never even offered this drug as i look at this one website and i has been given for uc and crohns for years first what i get for uc and that what they thought i had to begin with ugh doctors just pee me off
https://ldndatabase.dabbledb.com/page/other/YxfKeofL#
Posted 2/11/2011 5:40 AM (GMT 0)
Does anyone know what happens if you urgently need pain meds, like morphine or demerol or whatever, like if you became hospitalized in severe pain? I read BeeSting's comment that you ought not use the pain meds with LDN. Is there a known waiting period after which taking LDN you must wait before taking pain meds? Wondering how that works. Seems like a key point to understand very well before embarking down that path.
Posted 2/11/2011 3:55 PM (GMT 0)
I had no problems taking perocets or Tylenol while on LDN. Vicodin hasn't been a problem either. They know I'm on LDN and they haven't said anything. When I was in the hospital I was given Morphine, and the one anti-inflammatory one that starts with a T that I don't remember. I didn't notice any issues, but that doesn't mean I correct.
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