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nancerini
Regular Member


Date Joined Mar 2003
Total Posts : 100
   Posted 4/28/2010 10:19 AM (GMT -7)   
Hi all, I've been having on and off flares for the last 5yrs and so I've been on and off steroids this whole time. I don't want to take the immunomodulators or the new biologics because of the cancer risk and pneumonia risk. I have asthma and I catch colds easily and when I do, it's BAD. Now, to the point! Someone told me about a clinical trial in which they used Low-dose Naltrexone to treat Crohn's and the results were AMAZING! I think it was something like 90% got better. Anyway, my doc wouldn't prescribe it because it isn't FDA approved for the treatment of Crohn's. However, when I contacted the FDA they said that Naltrexone is NOT and investigational drug, IT IS FDA APPROVED and my doc can prescribe it for any illness he wants. PLUS, it is available generically so there is no reason for anyone to seek its approval for the treatment of Crohn's since there is no monetary gain. So, I am seeing a new GI doc today to hopefully get on this drug. Please pray that this doc will prescribe it. It doesn't seem to have any horrible life-threatening side effects like the other drugs. Plus, it is usually prescribed at 50m/day but the Low-dose treatment for Crohn's is only 4.5 mg a day. Anyway, type into your search bars: Low-dose naltrexone for Crohn's and read about it. You can also read about the drug on www.medlineplus.org and click on the bar "drugs and supplements" and find out about naltrexone. nancy

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/28/2010 12:50 PM (GMT -7)   

I have seen many posts here re LDN, but no real conclusive evidence that it is of real lasting benefit to Crohns patients. If someone has that info, please post it. I am always concerned with the "miracle drug of the week" posts which usually do not pan out.

As for the immunosuppressants like 6mp and imuran, they are prescribed for Crohns treatment at dosages far below the risk threshhold and there is no evidence of an increase in cancers in long-term users. I would encourage you to investigate them further, as they are among the most widely used and generally effective maintenance meds in Crohns treatment and have been for decades.


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/28/2010 1:46 PM (GMT -7)   
I am of the same mind. I just started LDN a month ago after a sudden onset of a severe flare.

My Rheumatologist Rx'd it for CD related tendinitis in my shoulder, when I did my reasearch I found out about the Crohn's study. Keep in mind that study is limited and there is double blind going on for CD which should be done by July 2010.

Something else to consider: I used the MS protocol. So I started at 1.5 mg and worked up to 3mg -- LDN is both weight dependent (3% of body weight) and effected by metabolism, mine is high so I may go higher, but am staying at 3mg for a few weeks to give it time.

LDN does take time to show results, but that's true of all the drugs, so...

I did notice improvement in my shoulder at the lowest dose, in terms of the pain -- it localized and stopped radiating. Range of motion has just begun to increase in the last week.

As for the CD, well my appetite is better, but my body's ability to process is complicated by an abscessed fistula, still my pain has come down and I'm willing to give it some time.

I've never responded well to the immune suppressants, and Humira is the last for me. As I have this abscess and I'm not sure I trust Humira with that problem, I'm going to put that on the back burner for now.

Check this out too, there are some podcasts full of information, and a forum there too.
http://www.ldnresearchtrust.org/

Best,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/28/2010 1:53 PM (GMT -7)   
Nancy, it might help you to also use this site's search to get more info on LDN. For it is has been a discussed topic for quite some time now, and has been used off label for crohns for quite sometime. Please understand that one cannot use certain narc's on it.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


nancerini
Regular Member


Date Joined Mar 2003
Total Posts : 100
   Posted 5/10/2010 9:00 AM (GMT -7)   
Hi all, I understand everyone's skepticism about LDN. I found a doctor who is willing to let me try it and I told her if it didn't work for me I was prepared to go on Humira. I do have a link to a database where people can post their progress while on LDN and I intend to post my info as well. As far as the risks for cancer and other scary infections and the like. You have to understand where my apprehension is coming from. I have all the family illnesses except cancer. Throughout my life so far I kept getting another diagnosis as years went on which has been very devastating to me. So far I have asthma, crohn's, hashimoto's thyroid, and depression/anxiety. I just felt like I needed to try something else before I committed myself to something that could potentially harm me. I have a friend who warned me about 3 people on certain biologics who had terrible side effects-I won't go into detail. I think as individuals we all need to look at our present health and decide for ourselves what the best option is. So I'm not condemning anyone for taking the biologics I am just trying to post some options for people like myself who are not "Ready" to make the step yet. So, here's the data for MANY people taking LDN. Read and decide for yourselves. nancy

http://www.ldndatabase.com
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