Low Dose Naltrexone or LDN is one of the “not so common” medications that some UC’ers use to treat their disease. If you’ve been following the iHaveUC site for some time, you may remember Stefan Steinsen’s story about his thoughts on LDN. I myself had never even heard of LDN until Stefan brought it to my attention. Probably like most others, not a single GI doctor told me about it back in the year after my diagnosis when I was desperate for help in managing the symptoms.
So, why are we taking the time to review LDN now?
Well, this should have been done a while ago. But, thanks to a loyal reader of the newsletter and site, I received an email two days ago which read:
Question for you – have you asked for reviews of Low Dose Naltrexone? I didn’t see any, but perhaps I looked in the wrong place. It sure saved my life.
I promised Ann it would be on the top of my list, and the time has come. If you have used Low Dose Naltrexone to treat your UC, please submit a review and share your experience via the button below.
LDN is definitely something you should talk to your doctor about. The FDA has their own ideas on LDN, and depending on what side of the fence they are on, scientists seem to either believe in it bigtime or discredit it due to “lack of clinical trials”. According to Stefan, one of the biggest struggles that LDN faces it the very small profit potential for drug companies. Without having the ability to secure rights to produce LDN, it gives very little financial incentive to the big pharma industry to move forward with marketing it.
So do your research. Here are several links to useful LDN related information. I’m hoping that some people who know more about this medication will include some ideas in the review sections below.
Low Dose Naltrexone (LDN) related links:
- LDN on Wikipedia
- The use of low–dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain. Full Study from April 2014
- Safety and tolerability of low–dose naltrexone therapy in children with moderate to severe Crohn’s disease: a pilot study. April 2013 Study from Penn State University
- Chronic Muscle Pain Study, Division of Pain Management – Stanford University
- Stefan’s Story – Is LDN Low Dose Naltrexone the New Cure for Colitis?
Submit your review
Got it prescribed by a scheister in San Francisco who charged me a bunch of money for the privilege and it had absolutely no effect.
There is no magic bullet to cure this autoimmune disease. It is always a combination of things that leads to improvement. For me, low dose naltrexone has been an important part of the many things I do to treat my condition. I have no side effects from it, and I get the benefit of no longer having hay fever symptoms that I have suffered all my life!
Not sure if people are still checking this post but LDN was the single most effective part of my treatment. Anyone suffering w symptoms really should consider it. (Stefan is absolutely right - large pharmaceutical companies have no interest in it as the patent on naltrexone expired in the 80s - so it's a cheap drug. They would rather sell expensive drugs - mostly for MS which was the original autoimmune disorder that LDN was discovered as an effective treatment for. Penn State - Dr. Jill Smith - has since completed research specific to Crohn's.) I was diagnosed in November 2011 after 6 months of moderate to severe symptoms. The initial treatment plan was prednisone and Lialda. After minimal improvement (and finding a dr who would prescribe it - definitely go to a General Practitioner - they are more open-minded about it) I started on LDN @ 3.5mg (most people take 4.5mg but I weigh 95 lbs). Within 2 weeks, I was symptom-free and have remained in remission ever since (4 years later). I eat what I want - although I never drank coffee to begin with and completely cut out soda on my own. I do drink alcohol socially and eat more sugar than I should but haven't had a flare up since. My follow-up colonoscopy looked so good (compared to my first one at onset of the UC) that my GI actually said she would start considering it for other patients. (My current GI in Austin is very progressive and prescribes it for a lot of his patients.) I have left-sided UC and was diagnosed w a 'moderate' case, so I can't even imagine what some of you have gone through. LDN really has worked wonders for me (and many others) so please consider it. Skip's Pharmacy in Boca Rotan, FL is the best place to compound it and answer any questions you have (I used to consult the pharmacists more than my GI when first diagnosed.) I also take VSL#3 but am down to a half packet every other day (2 full packets per week) and think I could probably cut down more but my stomach is in such great shape that I don't wanna change anything. Oddly enough, my stomach feels healthier now than it did before the diagnosis. Other treatments you might consider: Boswellia, Tumeric, Fish Oil/Omega 3s and Wheatgrass Juice. (But for real, LDN works wonders on UC and many other autoimmune disorders. It's sad that pharmaceutical companies and the FDA have inhibited the availability and marketing of it.)
Most doctors won't prescribe LDN so I had to see switch Doctor" to get it. Actually he had no credentials at all and charged me $400 for his consultation. I tried LDN for three months. It seemed to help initially but then lost effectiveness. Since I would have had to pay another $400 to get the prescription renewed, I stopped taking it.
Ulcerative colitis is a tough disease to treat, and it is almost never a one drug treatment. I think low dose naltrexone has been a wonderful addition to my ongoing treatment without interfering with anything else I take. It is like having a reset reset button for my immune system! It seems to make everything else work better, because it takes a load off the immune system. The fact that it is pretty inexpensive($1/day) is a real bonus!
I obtained a script for LDN while meeting with a doctor regarding acupuncture. I ordered it from a cimpounding pharmacy in nyc and took it as soon as it arrived as nothing besides prednisone has worked so far for my UC. I too first done fri before bed, 4.5mg. Saturday woke up at 9am, completely rested, feeling how I felt over 2 years ago. All UC symptoms disappeared over night. I had an amazing day, same thing happened the following day and that was it. The 3rd day things started to return to normal UC mess. Bloating, diarrhea, freaquency, urgency, just a mess. No one, including the doc who prescribed it to me can explain why it worked only for two days. I guess it's another thing to check off my list. Imuran is next :/
My story begins with 6 months of extreme difficulty following my diagnosis. Having read about the downside of stearoids I opted out of them and took 2 Lialda per day. After a strict course of the gaps diet followed by a vigilant adherence to SCD I improved but was weak and unable to exercise vigorously as I had before. About 6 months after beginning LDN I started to feel like myself and began weining myself off of the Lialda. My improvement continued to the point that as long as I stay SCD faithful I cannot tell that I have an illness. My older sister cured her Psoriasis with LDN also. My belief is that a combination of LDN and SCD work great. This process took 2 years. It did not happen overnight but it worked very, very well. I hope that others will try this formula. My advice is to be patient and adhere strictly to SCD. Best of luck fellow UCers.
I've been on LDN for two years. At first I wasn't sure it was doing anything but after I went up to 100 mg I noticed a change. At first the dreams were vivid but that passed after a couple months. I'll try anything to feel better and this is one drug that is on my long term treatment list.
I tried LDN for about 9 months. It might have improved my symptoms mildly, but it also might have been psychosymatic. It did give me amazingly vivid dreams......so that was neat.
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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