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.
Ann S.
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 shortly after being diagnosed 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.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
I was diagnosed with UC April 2012, after experiencing alarmingly increasing rectal bleeding. I was hospitalized
7/ 2012. The 1st GI I saw couldn’t decide if it was Crohns, UC or both. I got a 2nd opinion with a positive UC mild to moderate diagnosis. No one told me how to deal with it, what to avoid, etc. I was prescribed multiple drugs, all of which made me sicker than I already was & caused me a slew of new & potentially deadly problems. I rebelled. After personal research I decided on my own to try Sulfasalazline & the GI went for it. It worked fine for about a year until I began experiencing persistent dermatological problems (in other word, my face broke out). I had done massive re-search on LDN & & because I couldn’t find a MD that would prescribe it, I found a reputable source outside the USA. I began using LDN 2/2013 & experienced almost immediate relief from all symptoms. For years, I’ve had chronic consti-pation & within a couple of days on LDN, was going to the bath room the way normal people do. The 15 month flare I had experienced literally went away. What ever blood & mucous I had experienced stopped immediately. I am now using LDN as a stand alone drug. Gluten is a trigger for me. I resist all processed foods, soy, some night shades, other things. I haven’t been able to stop using sugar :-) I don’t drink or smoke; I’m so clean, I squeak. I’m due for a colon-oscopy. My current GI finally relented & prescribed LDN for me. I’m the guinea pig. If the colonoscopy comes back showing improvement, he will begin prescribing to his sickest patients. I’m crossing my fingers that all is well in colon land. I have had only a few instances when I was about to flare, one happening because I was out of town & ate salads more than 2 days in a row & accidentally got some gluten in something I ate. I’m not sure what happened the 2nd time, I think it was stress, but I was careful of what I put into my system the next day or 2, liquids mostly & I was normal again within 3-4 days. Probiotics don’t seem to do anything for me. I swear by LDN. I use 2mg capsules which I order from a compounding pharmacy in Florida. I’ve tried some local compounders & they were expensive & you have to watch the fillers they used in the capsules. I tried upping the dose to see if I could reach the recommended 4.5 mg. protocol dosage but it was too much for me & I had some reactions. At the 2mg. dosage, I have no reactions. As an aside, I became hypothyroid not long after the UC diagnosis. When the MD tried to put me on Syntrhoid or Armor, I resisted & told him I wanted a desiccated thyroid med & he relented, prescribing NT Thyroid (which is what I asked for). I’m mentioning this because I try to steer clear of anything that has the potential to do more harm than good or has too many known side effects. Since I don’t have a chemistry background, trying to understand the pharmacology of some of the crap the MDs try foisting on patients is challenging. I know there are new drugs out there, but as far as I’m concerned, LDN has the least potential to harm (actually, none that I’m aware of) & has been the most effective for me. For about a year into the UC diagnosis, my life had come to a screeching halt. I was lying to people that wanted to hire me for jobs, telling them I was really busy & unable to meet the request because I didn’t want any one to know how sick I was. I didn’t want to explain & tell people, “hey, I’ve got a bloody ass & am liable to crap any time, any where for no reason!”. I’m happy to say, I no longer carry around an “accident kit” (used to keep it in the trunk of my car just in case). I carry one sanitary napkin in my purse, just in case. In closing, I take nothing for granted. I’m grateful as heck for Low Dose Naltrexone.
Ann- thank you do much for the post. My GI recently said all the meds are just poison to my body and that I should just get my colon out to be healthy the rest of my life! I will ask about LDN becuae I am not quite ready to have surgery . My brother had his removed 17 years ago due to colon cancer – he has been fine and is also pushing me for surgery- he is afraid I will die either from UC or the meds!
I take LDN….have for about 2 1/2 years now. I take a 3.75mg capsule every night. (That dosage was based on my weight…the usual 4.5mg dosage is based on a 150 lb person).
Because I started taking it AFTER I had already attained remission from the probiotic and L-glutamine, I never mention it. I can’t say whether it helps with UC or not…but it does make me sleep very well at night! I love it and will continue taking it forever…there are no side effects for me and as an anti-prescription drug person, that’s sayin’ something…lol.
:)
Hi. You say you are anti-prescription person. Does this mean you can obtain LDN over the counter? Also, since probiotics worked for you, which kind/brand do you use? Thank u for your feedback!
No. Lorena…you do have to have a prescription for it. I am an anti-DRUG person…but LDN is such a low dose of the drug naltrexone, that there really are no side effects at all. I just seem to get negative side effects from every single drug that I’ve ever been prescribed. Not with LDN!
I take one capsule of ULTIMATE FLORA CRITICAL CARE by RENEWLIFE (50 BILLION STRENGTH) first thing upon waking in the morning, on a completely empty stomach, and then no food or drink other than water for at least a half an hour.
Bev, I have been taking LDN for 2 weeks with insomnia. The doctor put me on the 4.5 dose. I know I need my zzz’s. Do you have to take it at night. I weigh over 150 lbs. the web site says to get a lower dosage and I read some were to slowly increase it. Do you know anything?
Hi Lori,
I started out on 3.75 and am still on that dose 3 years later. I weigh about 130.
It sure does not cause insomnia in me…it makes me so tired within about 10 minutes. It sounds like you might need a lower dose? I would ask your doctor if you can try lower. That’s all I can really say.
I called, still waiting to hear back. Do I gradually increase it then do you think? My doctor isn’t very helpful.
You know, I’m not sure. You could go to the LDN official website. It had a lot of info on there….or you can even ask the compounding pharmacist. They often know more than the doctor will.
I have never needed to increase the dosage. I wonder what would happen if I took the 4.5 dose that is the ‘norm’. Perhaps I would have had insomnia as well. I just loves how LDN makes me sleep and I’ve never really been sure if it helps with the UC, because I was already symptom free when I began the LDN.
I did check out the web site. It says do 2 or 3. Not sure which one to try. Thank you for you help.
I’m trying to figure out the dosage of LDN. Talking with a pharmacist at Skips in Boca Raton anyone with CD or UC should start out with 1.5 mgs for 30 days then 3.0 mgs for 30 days and then 4.5 mgs as maintenance. Sometimes when symptoms are real bad LDN in a transdermal cream is prescribed. Cream rubbed into the skin between the wrist and elbow between 9 and 3 just like the capsule.
Have you tried L-tryptophan? I use it to help get back to sleep sometimes.
Bev, thanks so much for replying. I’m going to my GI in two weeks and will discuss with him. I’ve had a terrible flare up in April that landed me in the hosp for eight days. The worst so far. I’m. Of the steroids now. I’m on 6mp which is leaving me with less and less hair and on liada and canasa. I’m going to speak to my GI about stopping 6 mp all together. Again thanks for your response. :-)
Any time, Lorena! Ending up in the hospital from a flare has never happened to me, thankfully. That scares the heck out of me. I always figured…it has to be pretty darn bad to end up in the hospital!!
Take care and talk to that GI!! You are the boss of you….nobody else is.
:)
Hi Bev and Ann, thanks for your info, I’ve been very interested in LDN for my son. He has Crohn’s disease and has been taking Humira for about 5 years. He’s been having some side effects that we don’t like (which ones do you like?) and are looking for alternatives. Can you tell me where you were able to get a prescription for LDN? Our GI thinks it’s hogwash, so there’s no way he would prescribe it.
Hi Stacey,
Funny…my doctor (GP) was the same. He thought it was snake oil…lol…Somehow, I managed to get him to write the prescription. Otherwise, I would have asked to see a different doctor. I think that he knew that. You can always see a different doctor…are you in the US? Do you have ‘walk in clinics’ there like we do here?
Hi Bev! Thanks for writing back so quickly! Yes, we are in the US. I suppose I could try our GP and see what he said. The GI Doc I don’t think would write it, unless we agreed to stay on the meds my son currently takes, and he’s now wanting to add methotrexate I think. He’s started having joint pain and even though all the tests so far are negative for RA, and Lupus, and normal for inflammation, his nurse told me the other day that he still could be in a flare or have developed RA and methotrexate works great for that. I really don’t want to add methotrexate, and my fondest wish would be to get him off the Humira.
Boy, I understand completely. Those drugs are so potent and harsh.
Good luck Stacey…I can’t imagine having to make these decisions for a child. You get you GP to write the prescription!
Cheers :)
I just started taking LDN 6 weeks ago. I went to the online Dr because my Dr would not prescribe it. He wanted me to start Humira but the side effects scared me. She prescribed 4.5 mg which is from a compound pharmacy. I took 1/2 pill for two weeks and had no side effects so I started on a whole pill. Have been on for 4 weeks and I feel great. The only problem I have is now I am constipated. That is a problem that most people with UC want to have. I am actually looking forward to my colonoscopy in a couple of months to show my dr how good it works. I am also taking VSL #3 which is a probiotic specially for IBS and UC.
Lori, Can you pass on your online doctor info please. Thanks.
Hi Lori
Is LDn still helping for your colitis?
LDNdoctor.com
Yes, I started with LDNdoctor.com – very nice people. Got my LDN there until I found a local doctor to prescribe it.
It put my autoimmune disease in remission — for about 2 years now. Off the methotrexate, prednisone, plaquinil, etc.
It gave me insomnia at first, but it doesn’t anymore. I know several people who started low and worked up to 3 or 4 mg. I am at 3mg at a body weight of 125lb.
Hi Gaius
Is LDn still helping for your colitis?
CBD is the non-psychoactive compound with medicinal applications like anti-inflammation anxiety, reduction memory boosting and some seizures reliefs in the children with autism like what I read in this article blimburnseeds.com/news/marijuana/free-grizzly-purple-kush-cannbis-seeds-attitude-seeds-bank/attachment/free-grizzly-purple-kush-cannbis-seeds-in-attitude-seeds-bank-2/. this is so true that CBD can be lead in high effect when it has a THC that has a psychoactive that can give you high effect
LDN is a LIFESAVER! Literally!
I was in a 7 year severe flare. I’d been hospitalized so often, I’m Facebook friends with emergency room docs and staff nurses. I’d taken the list of treatments… Prednisone, Rowena, Canada, lialda, apriso, mesalamine, 5Asa, humira, Cipro, metrodazinal, a few different biologics.. it was like a bad joke, NOTHING WORKED. First I gained 60lbs and lost all thyroid function, then I lost 75 lbs and was so anemic I was being hospitalized for that.
I went gastro to gastro thinking someone, anyone would have an answer. I was very successful in a lucrative career and halfway through my 7 year flare, I slowly became isolated and so sick that leaving my house, my bed or working was impossible. I loved to work, ski, play tennis, drink wine, travel and UC took all of that from me.
Then, one night when I was up all night being sick (again) I read about LDN. I almost discounted it because I had seen so many “miracle” probiotics, cbd oil, supplements, juices, teas… My Dr told me it was snake oil. But I kept reading and the science behind it made so much sense I finally just went out and found a functional medicine Dr and got prescribed LDN
THANK GOD FOR LDN!
I felt an improvement the first week! I had to raise and lower my dose a few times. It wasn’t always perfect but it WORKS! IT WORKS! It also cured my thyroid problem (Low thyroid since 30), my hormone levels are perfect- no more menopause misery, my skin looks beautiful- I used to have occasional acne and eczema but none since LDN, my hair is thick and glossy- I had clip I extensions and root color for years to cover all my hair loss and 2 years on LDN and my hair is as thick and healthy as my 20s, my skin is not loose and saggy anymore, I sleep like a baby and my UC IS UNDER CONTROL!!!
I found a good supplier in Israel. I respond well to thier LDN. I did notice that different pharmacy LDN feels different for me
I’m sad Dr don’t prescribe and educate patients about LDN. I don’t know why, it has NO SIDE EFFECTS. It’s safe, it’s proven, it’s been used for decades.
I owe my life to LDN. I wasn’t going to be able to make it the way I was. It can take some modifying, I had some issues. We didn’t realize my thyroid was improving and my thyroid medicine was too strong which threw me into a flare. But we just lowered my thyroid meds and eventually eliminated them and I was back to healthy. I had been on thyroid meds for 30 years. I also had an issue with Buproprion / Wellbutrin and LDN a few months in but it turned out I didn’t need Wellbutrin anymore and when I stopped it, I was fine and LDN was working. (20 years on Wellbutrin, now I do not take it at all)
LDN has been a reset button on my life and health. I only take LDN and a multivite now. I had 20 years of bags and boxes of pill bottles ruling my life and now they’re gone.
HI
I have been suffering from UC since 2014…How is your colitis these days
I wrote in 2016 about starting LDN. It took a couple of months to really work but I feel great. I am still on it 4.5mg, along with Vitamin D. I have some days of it acting up because of what I ate, but overall I feel good and my colonoscopies are good. I had a narrowing my dr wanted to do surgery but was able to balloon it open. Last colonoscopy, no more narrowing. I would recommend LDN to anyone with any auto immune issues.
Your story is quite inspiring for all the UC sufferers …I wish you will continue with the good health in future also…Is it necessary to follow any specific diet while on LDN
Thank you. I am on a Keto diet of low carbs also.
I take LDN (4.5mg nightly) along with the SCDiet for my UC of 36 years. It’s been 4 years now and works like a charm to maintain remission with the occasional hiccup. When I do flare I immediately quit the LDN and use a short course of prednisone starting at 50mg to kickstart remission and begin tapering as soon as it does. Then I resume the LDN for maintenance. It’s cheap, effective and safe.