Editorial Note: RxISK can sometimes seem to be all about the horrors of treatment. It’s not. It’s about people making the best use of drugs to make their lives better. Central to this is finding a doctor who will believe you when you tell him that something good or bad is happening. The horror arises when people are not listened to – when the “evidence” is given greater weight than the observations of a mother or wife.
As Anne Marie Kelly in Driven to Drink has shown, a motivated person with no background in healthcare or biology can help all of us understand things that it might take decades for experts to find. I was recently in Pakistan and this striking account by Osama Mustafa of a response of Ulcerative Colitis to Low Dose Naltrexone followed me home. It fits into a trail blazed by Anne Marie – except in this case there is a large literature out there attesting to the benefits of LDN.
I started suffering from Ulcerative Colitis after I had surgery for hemorrhoids about two years ago. My own assessment is that the stress from the surgery triggered my body to develop Colitis. Ulcerative Colitis is an autoimmune disease where one develops bleeding ulcers in the colon along with fever, weakness, anemia due to the blood loss and weight loss.
I couldn’t function normally since I had to rush to the washroom over 15 times daily. Life was depressing. I was stuck at home most of the time and was not able to run my business that I had just started. I ended up in the hospital where they referred me to a gastroenterologist who confirmed the diagnosis of Ulcerative Colitis.
A well known gastroenterologist put me on a conventional therapy of Melasalzaine. Initially my bowel movements became more manageable and I started to feel better for about three months. But then I started to suffer from nausea, and headaches. As my body developed a resistance to the drug, the doctor increased my dosage of Melasalzaine. It helped me and my symptoms improved but it could not control the bleeding.
Because of this I was put on prednisone, a steroid. It helped reduce the bleeding. But this comes at a price – steroids have severe side effects including destroying your bones from within. I put on about 10 kg in weight. I suffered from nausea, headaches and developed rashes all over my body. Gradually the medication became ineffective.
So my doctor decided to put me on Azathioprine. This is given to transplant patients to prevent organ rejection. I took this for appropriately 1.5 months but my rash went out of control and the nausea on medication was so strong that I could not taste food anymore. Everything tasted metallic. This apparently indicates that my liver and kidney were being affected so I decided to discontinue the Azathioprine.
By now 1.5 years had elapsed. I had become became increasingly weaker and could hardly walk. My blood loss continued. My hemoglobin went down to 7.6. It was 15 before the hemorrhoid surgery. I had to go and get a transfusion of 2 pints of blood. I felt better immediately after the transfusion but got an infection somehow through the transfusion so had to take an extremely strong antibiotic for 10 days.
After recovery from the infection, as my symptoms of Ulcerative Colitis were still not under control and the bleeding started again, my doctor increasingly frustrated recommended that I should have my colon removed. The idea was that if they were to remove my colon they would remove the area with ulcerations.
I thought about it. At the age of 41 to have the colon removed means that surely other complications can arise. I researched and found that there are complications from the surgery. It is not a 100 percent cure. I told the doctor that I didn’t want to go through another surgery knowing that my first surgery was responsible for the colitis. He practically gave up – he told me to continue with the medication I was taking and to manage myself.
Being an enthusiast for herbalism I started my own research. I read various blogs and websites. I came upon a website which mentioned Low Dose Naltrexone therapy briefly and chased this. After reading the stories patients with ulcerative colitis and the results I decided to go and talk to my doctor about it.
He asked me to provide documentation on Naltrexone. After he reviewed this, he refused to give me the prescription for it. When I asked him why he did not give me a reason but just told me that I could not benefit from it.
I decided to see a medical professor I was told about through a colleague. His specialty was to remove colons and do J-pouch surgery. After showing him the documents and a detailed discussion, he agreed to write me a prescription for LDN.
He said it may be worth a try. Worse comes to worst, due to the low dose it cannot harm me. So armed with the prescription I went to the largest pharmacy in the city of Karachi looking for a 4.5 mg dose of Naltrexone. To my surprise they couldn’t understand the concept and told me that they could not make it for me.
After a long search I found a pharmacist who agreed to make it for me. I bought 50 mg tablets of Naltrexone and gave them to the pharmacist to grind and portion the medicine into 4.5 mg. (Please note that only normal naltrexone and not the slow release type should be used).
I started to take the medication in August. At that time I was on 4g of Melasalzaine and an iron supplement. My ulcerations were bleeding intermittently and I had 4-5 washroom visits a day. After I started taking the Naltrexone I immediately felt I suppose an endorphin rush. Initially I was taking my daily dose around 9pm, but this started causing disturbances in my sleep pattern.
After taking Naltrexone for ten days I noticed that my bleeding was much reduced and my washroom visits were more regular. To remedy the disturbed sleep I took the dose after breakfast. I continued to improve and after six weeks I felt well enough to quit taking Melaselzaine.
It has now been almost 4 months. My bleeding has stopped. I visit the washroom 1-2 times a day. I feel stronger and my life is back to normal. I do have remnants of the side effects of the earlier medications but I am feeling stronger on a daily basis.
Low Dose Naltrexone has been amazing for me. It has allowed me to start living my life again. I feel stronger physically and mentally. My motivation is back. There is still a lot of healing that is needed but I am well on my way. Conventional doctors know very little about Low Dose Naltrexone and are generally reluctant to prescribe it since it is not listed as a standard treatment. They would rather prescribe highly poisonous drugs with extreme side effects.
Here in the US, naltrexone is approved for one use only: helping narcotic addicts and alcoholics break the habit. Just as in Pakistan it seems to be available only in 50 mg tablets. (A very expensive, on-patent depot version is marketed by Alkermes under the brand-name Vivitrol.)
Still, it looks like there are many people with UC and Crohn’s disease trying this drug, especially families with children affected by these conditions. Many are getting good results … but the degree of hostility many of them encounter in their doctors is amazing. One person on the Crohn’s Forum said that her doctor responded to her request to try LDN by recommending she see a psychologist to overcome her fear of Humira! Another told of being “fired” by the doctor (which seems to be getting more common overall in the US).
There is some preliminary research being done on LDN for inflammatory bowel disease … but I fear it will be an uphill fight to get more, given the resistance by various medical “thought leaders” and their industry sponsors who have bet the farm on expensive and hazardous biologic products.
This also makes me wonder: If a drug that blocks opiate receptors seems to help so much, maybe there are unrecognized dangers in giving opioid drugs to Crohn’s and UC patients for pain?
Dear Johanna, Thank you for the comment. I just wanted to add some points to your comment and inform people further. You are right Naltrexone in its FDA approved form comes in the 50mg tablet and it is approved for helping people with drug and alcoholics.
It is being prescribed in the low dosage of 4.5 mg pills one pill per day. The way that it works is that once the patient takes the LDN the opioid drug triggers your body to produce three times the endorphins. With the release of the endorphins it boosts up your immune system almost like a reset button for the autoimmune dysfunction that is being caused by the immune system. There are plenty of compounding pharmacies in the US and UK which are reliable and giving to patients with prescriptions. More information can be found at http://www.ldn.org.
The main reason there is a lack of interest by the pharma community is that the patent on Naltrexone has lapsed so now it can be produced generically and relatively cheaply. And in order to have it approved for UC or Crones will be a costly procedure with the FDA and there will be a slow ROI for the drug companies.
So far the side effects are non existent and reading on bloggs and the internet people have been on LDN for years and have not suffered any known side effects as well as if you were to take the prescribed drugs for the treatment of a particular disease the known side effects suffered are far greater.
Hi I need help! My 16 yr old daughter has been diagnosed with UC for almost 3yrs now and almost every 4 months gets cdiff and ends up in the hospital. It’s devasting to see my teenage daughter not enjoy life because of her constant flares.GI has tried Mesemalazines which she is allergic to and She has received about 5 treatments for remicaide and seems like nothing works. I was told about LDN and the GI doc refuses to prescribe it. I live in Central Florida and need guidance of how can I get the 4.5 liquid form of naltrezone which is absorbed better thanx pills. Please advise.
Judy, go to https://ldndoctor.com/…..cost is $210 for a 30-minute consultation. The doctor is wonderful, I got my prescription the same week, from a pharmacy which mails you the drug. Good luck !
Hi Judy, I ordered it for my son from River Pharmacy in Canada(no RX needed) dissolve 1/2 tab or 25mg in 25mg of distilled water and use a syringe to take. Store in the fridge.
Hi Judy, it’s been about a year since you posted this and I am curious if you found help for your daughter and if she tried LDN? My son has had UC for 2 years now and is still suffering. We have found Functional Medicine doctors who are on board with LDN. I am cautiously optimistic that this will help him and looking forward to him trying it.
Thats Heartbreaking!!! have u researched Fecal Transplant!??
I just read your comment , Judy, that was asked in 2017 about the liquid LDN. How did this turn about for you? Have you any advice on locating gastro doctors that are receptive to using this therapy upon patient request?
Fully agree with you Dr. Osama Mustafa about the lack of interest of pharma community in molecule with expired patent. I would even add poor and/or marketing driven (mis) information for the medical community in its entirety.
Off-label prescription should be obviously used carefully, analyzed case by case, evaluated drug by drug but anyway seriously considered by doctors and physicians in a global scenario with too much conflicts of interest.
A big case of off-label prescription is represented by Baclofen for alcohol addiction.
New clinical trials are on the way but there are already enough studies/evidences and a really big community of patients/case reports that should bring the medical community to a larger use of this drug as is already happening in France where really soon it will be approved from local FDA.
The case of Baclofen is even so particular because apart from alcohol addiction seems to be really effective even in other addictions that affects the same receptors (binge eating, cocaine). As any other drug has secondary effects and abrupt abrupt withdrawal caution but the fact that is prescribed from the ’70s (for SM-spasticity) confirms the safety in long term use and the general good tolerability.
Being metabolized by the kidneys (only 15% by the liver) make it safe for patient with hepatic problems and so should be really seriously considered as an essential tool to treat alcoholism.
As many French doctors supporting Baclofen they say this days… “while waiting for approval our patients risk to die…”
I was on LDN for about a year, and felt it did me a lot of good – initially I was on it once a day (after building up from half a ml to 4.5 mls a day), but noticed that although I felt really good in the hours after taking it, as it wore off nearer to the next dose I did not – so I divided it into half doses twice a day which seemed to keep me very level throughout the whole 24 hours.
Then a few months ago I forgot to get a repeat prescription, and since I would miss my medication for about a week even if I went ahead trying to get hold of the doctor straight away, I thought I would see how I felt without it. I did not notice any change, good or bad, so I decided to go ahead without it (as I have been trying to reduce the number of medications I have been on). But now more and more I am aware that the last months I am very different/not right, especially psychologically, and in terms of energy, and I am wondering if the reason is that I am not still on LDN; and that I should ask to go back on it …
Susan have you since gone back on LDN and if so what have you experienced? Also are you taking it for UC?
Dear Susan, I hope you are well. After reading your comments on the use of LDN I wanted to let you know that LDN will not do anything for your condition. What LDN does is sets off the immune system strength and triples it. For the reaction to happen you must have 4.5 mg dose. The LDN stays in your system for 3 hours and the boost in your immune system stays for approximately 20 hours or so. The changes in your symptoms can be slow so you must stick to it. And splitting the dosage is not recommended.
Thanks Dr. Osama Mustafa for sharing your experience with LDN. How about the use of LDN in children ? Also what do you think, can be done to make this heard at FDA on this potential drug result.
Dear Mr Rao, Thanks for your comment. LDN works the same way in children as it does in adults and the dosage to be used may be reduced to 3mg. The FDA is a beast of an organization they are interested in how much money can be made not in the welfare of patients. Unless someone finances a study with LDN it will fall on deaf ears of the FDA.
I have been trying to get Naltrexone here in Islamabad but not a single pharmacy has it. I even tried Lahore but they don’t have it either. So could some one please tell me where I can get it here in Pakistan. I do have a script from overseas and should be able to get one here too.
Hello Abbasi, I have been getting my Naltrexone from a pharmacy in Karachi. The pharmacy is located in Medilink and I can give you the coordinates just send me an email firstname.lastname@example.org
Dr Osama I’m from Lahore,pakistan.sir I’m having histamine intolerance since 4years but i was not aware of it .wrong diagnoses an wrong medicines made my condition worse.i ‘ve got inflammation on my lungs and all over my digestive system.i would blame the medicine that doc has prescribed is predisinole and I took it’s just worsening my inflammation now.now i ‘ve got sharp pain in my kidneys as well.bt i dont want to see the doc any more.i did my own resaerch now I’ve come to know about LDN.can you plz help me how and where can I get it.right now I’m in KSA.i just want to give it a try.
Hello Ayesha, sorry for the late response I hardly check this page. How is your health now? Please call me on +923018555592.
My son was diagnosed with ulcerative colitis almost 4 years ago. He was hospitalized last Nov with a flare-up and has struggled since, rounds of prednisone, azothiaprine (got pancreatitis from that), and 6 infusions of Remicade plus weekly methotrexate injections. No real improvement. With options running out, our GI physician who is an IBD specialist agreed to LDN at a dose of 4.5 mg. She stated that she didn’t believe it would help but agreed nontheless and called in a prescription to a compounding pharmacy.
In the one month since my son has been on the LDN, his c-reactive protein (CRP) which measures systemic inflammation, went from 121 to 40. Normal is 3 or less, I believe. Still very high, but that was the only change we made in his therapy in that month. As a nurse, I’m very encouraged.
How old was your son when he went on LDN?
I have been using LDN at 4.5 mg now for ten years. I have MS. It stopped the progression of my disability. I fortunately have had good doctors who were willing to let me “give it a try”. Also I found a “compounding pharmacist” who, by the way, will mail your prescription to you. They happen to be near by me in Snoqualmie, WA.
In ten years I have had no noticeable side effects and am only sorry I did not find this medicine until I was already in a wheelchair, but I am still working full time and am now nearing retirement in a few years.
This drug, however it works and there seems to be several theories, is past its patent date so nobody can make any big money on it. Because of this nobody is willing to put up the cash to do the necessary trials to get it “approved” for anecdotally dramatically helping some of the most debilitating autoimmune diseases in our society.
I saw your response on rxisk re: naltrexone from 2014. I live in northern Washington state and although my GI won’t prescribe it for me I’m considering going to Canada. Would you pm me the compounding pharmacy if you wouldn’t mind? Thanks so much, glad it worked for you!
Dr. Osama Mustafa would you please advise of any pharmacy in Lahore that makes this medication. I am suffering from UC since June 2014 and and have lost 40 lbs eversince. I’ve been on prednisone, asacol and getting remicade infusions every two months but remission seems to be a far fetched thing even at this point. Please respond at your earliest convenience as I’m planning on visiting Pakistan in next couple of weeks and also you can let me know of that pharmacy in Karachi you were able to get this medication from as I have few relatives residing there who might be able to get it for me.
Please and Thank you
Dear Muhammad Thanks for sharing your story. The pharmacy in Karachi is located in Medilink in Karachi please send me an email and I shall send you the contact information. Where do you live?
I’ve had UC sense I was 15. For 4 years I was on the mesalamine and consistently sick. I ended up on high doses of prednisone and was still sick, ended up in a coma in a Cincinnati hospital. I was eventually given Remacade. That helped me achieve remission. I was symptom and treatment free for 5 years. Now I’m having severe issues again, my doctor doesn’t want me on the Remacade or any type of immune suppressant. He was such a jerk about it. He would dismiss my concerns and ignored my medical history. He told me to just take the mesalamine, disregarding the fact that I’m basically allergic to it. I lose more and more blood every time I go to the bathroom.
My mom did some research and told me about LDN. I have an appointment in a few months with a new doctor, I hope he will consider this treatment! Fingers crossed! It sounds like a God Send
Dear Rebecca, First of all please think about a new doctor. Any doctor that is not willing to listen to you or give you respect may not be safe. Please get your LDN at the earliest and start on it. If the doctor you are waiting to meet doesn’t prescribe LDN to you then find one that does. You are going to have to start on that and give up the mesalamine by the way that is also an immune suppressant. Also please consider Boswellia serratta. atleast one gram twice daily it will help you heal the ulcerations.
Boswellia Serrata. Is that Frankincense?
My doctor will not prescribe the LDN. I live in the Bay Area, San Francisco. Los Altos. I refuse to put any more poisonous drugs in my body that are making me worse! Just continues to give me Predisone thatis not working either. If you have an recommendations for a doctor in this are who will be willing to explore some other options, please let me know.
Dear Sharon, I just got your message as I don’t get auto updates. I don’t know of anyone in San Francisco who would prescribe LDN Can you please your medical history with me? ie your story as well as the medication you are taking. I will try my best to find a doctor for you. And ofcourse you can always bounce ideas off me I have been on LDN for over 18 months and it is truly great my recovery is 95 percent there and looking forward to greater improvement. My email is email@example.com drop me a line for a quicker response
Sharon Beckham ,
My 23 year old daughter who has suffered with UC since she was 15 lives in the San Francisco Bay area and receives LDN from Dr . Samuel Tesfay in Walnut Creek . She also receives Vedolizumab infusions but we are hoping to taper off them with time.
Good luck . .
HI Orly Frank,
I live in Bay Area. My husband has been bleeding for 2 months already. His Doctor has been giving prednisone. Doesn’t help. Please, would pm me please with the doctor that prescribed you LDN
I hit that realization as well: I am sick of these drugs!!!! No more for me. They make me way worse and irritate my skin, give me head aches. I am done!
I’m from Cincinnati too. Did LDN work? I got diagnosed at 17 and have been miserbal since. Went through mezthalonine (spelled wrong) then lialda, simponi, Entyvio no 6mp. He says my Enzo step is surgery. I’m gonna go the alternative route but I hear ldn work so curious as to what it did for you
My naturalpathic Doctor put me on LDN a month ago after having UC for Ten years. Almost all of my symptoms have cleared up completety.
Did you have any side effects at the beginning? I have UC and have only taken LDN at .5mg for 3 days but have had bad flu like symptoms since starting it. I’m wondering if this is a good sign or bad?
Can you,take LDN for colitis if you have CVID???
Hi Scott, Sorry for the tardy response. Yes you absolutely can take LDN. Please see the following https://vimeo.com/118126981. Please feel free to contact me at firstname.lastname@example.org or call me +6584294722. The answers are out there we just have to have faith and find them.
Salaam Dr Mustafa
I have bone cancer which has affected my bladder and prostate. I need some LDN for a cancer protocol I’m following but my doctor and the surgeons won’t prescribe me any. I’m in the UK, can you tell me where my family can buy the drug in Pakistan and send it to me.
Wassalam Nadim, Thank you for reaching out. Please have your relatives call Mr Rehman at the pharmacy at Medilink clinics by do Talwar in Clifton. +922135376071-2 Ask him to provide you with 4.5 mg dose. Also I suggest the following supplement Curcumin (bioprene) 95% extract 500mg 2 capsules twice a day. Curcumin is a extract of Haldi/turmeric and is one of the best anti cancer herbs available. You should be able to get it from either GNC or Holland and Barrett in the UK. Feel free to email me at email@example.com as well as +6584294722 Best regards Osama Mustafa
Hello dr Osama I am addicted to narcotic drug heroine and now I just want to quit even I try to quit but I can’t I used methadone 20mg but it doesn’t work when I stop taking methadone it’s bring me in same bad condition and today I just found vivitrol could u please tell me it will work ? If it will work can I bought it in Karachi… Thanks
Dear Dr. Osama Mustafa !
I am male, 54, with uc since 3 years, one short periode with remission after prednisolone i.v. and asacol and the hole lot in hospitale. Started serious bleeding one year ago and went on Humira (God forbid that) for a periode, which stoped the bleeding for half a year whereafter bleeding and I switched to Boswellia, Trifalla and Curcumin which kept me 80 % fesh – untill two month ago where the bleeding came back, in a different way than before, it’s relatively solid stools, but every time (15/day) is finished with lots of blod, like if one was pressing half a orange over a salad, just all red. Well, finally when they now talk about removing colon, 5 days ago I started LDN, 1,5 mg, 2,25 and today ( night 🙂 ) 4,5. What I would like to ask about is, if it is possible to say anything about how long it usually takes for LDN to set in ? Also it seems strange to continue any alopatic medicine since that is surpressing the system while LDN is boosting it ? Is it thinkable that the LDN can reverse the inflamation and the bleeding from the pseudo polyps – which I just saw on the monitor a week ago inthe hospital. It didn’t look so nice.
Hari Om Tat Sat
Dear Ole, Thanks for reaching out. Please continue with lDN this is a battle that you will be fighting for the rest of your life. Stick to the 4.5 mg Dose and supplement with Boswellia, curcumin, and Bael Fruit extract. Do not take Triphla. this irritates the bowel and can cause the bleeding that you are talking about. Delay the surgery as long as possible. I have successfully avoided it for the last few years. please communicate with me over the email as I don’t check this regularly.
best of luck
I also do not check this page so often. Just want to tell that LDN has been my cure for two years now, it’s nothing short of amazing ! All the doctors at the gastro-medical center are very surprised that I feel so good, but they shake their heads when I talk about LDN. It is my experience that the solution of 50 mg tablets dosed as 4.5 ml in a little water has a better effect than the 4.5 mg tablets that I have also obtained in pharmacies. If you can not find a doctor who wants to prescribe naltrexonehydrochloride then seek another doctor immediately.
Should the LDN be used alone or in conjunction with another medicine?
My 17 year old son is currently on Remicade due to Ulcerative Colitis, but wants to get off due to the side effects. We were told the LDN won’t work on its own? is that correct?
Hi Lisa Thank you for reaching out. Ldn will work on its own but due to the nature of the UC your son should take the following supplements
Boswellia 500 mg 2+0+2
Curcumin 500 mg 2+0+2
Bael fruit 500 mg 1+0+1
Lglutamin 750 mg 1+0+!
Hopefully this will help. please communicate with me on Osamamustafa28@hotmail.com
My Gastroenterologist also would not prescribe Naltrexone (low dose or otherwise). It has been almost 3 years on Lialda (Mesalamine). Initially, I tried GAPS diet which was not working. I am still on GAPS Diet. I recently tried to eat foods not on GAPS Diet and the symptoms got even worse. The Lialda helped initially, for about a year. Then the symptoms started worsening. Now, about 3 years later, I am also on an enema form of Mesalamine in addition to the Lialda and symptoms are only marginally better. Locally, I found an alternative medicine clinic with both a nurse practioner and a medical doctor staffing it. They were knowledgable about LDN. I just started it tonight!!! They have me on a 0.1ml dose. If I don’t feel adverse side effects (such as problems sleeping), I will increase the dose every 4 days by 0.1ml. If I do experience side effects, I am to drop down to the next lower dose and stay there a few more days before trying to increase. I am supposed to increase the dose all the way up to between 3 and 4.5mg (will have to figure out best dosage for my body). I was given a prescription for 4 pills, which cost under $6. I was told to crush one 50mg pill using a mortar a pestle, then add 50ml of filtered water and mix well. The solution must be refrigerated.
I have had UC for 10 years – pancolitis for 4 of those years; I too have done the round of all medications, Remicade and Humira. Nothing really worked to get me into remission; besides side effects were horrible and I went off of them. After researching for about 6 months; visited Healingwell forum, found that people with UC have had great success with LDN. I pulled up the website, went to a Sports Health and Wellness clinic (open to alternatives meds) and found a physician whos interests in auto immune disease and she prescribed LDN. I have used it for 2+ years; tappered off. Have been off for 2 years. I felt improvement within 4-6 weeks, only went to the bathroom 2 times a day and then 6 – 12 weeks, stools were normal – no bleeding, D or anything. My just recent colonoscopy showed no signs of inflammation except in the lowest few cm of the rectum. A topical mazelamine can take care of that quickly. No dysplasia of the rantom biopsies of the normal issue of the colon. I have one small 6mm polyp removed non-cancerous, but a “potential” pre-cancerous. So a follow-up in 1 year. Follow-up is a good plan. I am very thankful that all is good in there and that I am a firm believer that LDN did it for me. I also reduced the 4.5 mg to about 2.5 after about 6 months – I figured that this was my one and only drug that can give my life back. Try to get on this if you can, the side effects minimal and I’m pretty sensitive.
Hey Gretchen, I am about to start LDN for the first time. Did you do anything else, that worked with the LDN? Mesalamine, or dietary changes. Ive heard that while you’re on it, you want to work on your gut microbiome. Just want to see what you did.
Dear Nancy How are you. How is your journey going with LDN? Please remember that if you are going to use LDN then you have to stop the immunosuppressant’s Would love to hear from you about the results that you have achieved. wish you the best of luck.
My 18 year old daughter starts on it today. She has UC and had to leave college. I pray this works for her. After reading what everyone has said I am in tears. It’s been a total nightmare for her for 2 years. I found a wonderful holistic doctor in Charleston SC that prescribed it for her. It’s coming from a pharmacy in Washington State. I’m so glad something led me to this website!! I hope you all stay well.
In Scandinavia and the US some patients are finding improvement with their Parkinson’s symptoms with Low Dose Naltrexone – anyone know any links to evidence in this regard?
WARNING: Long term use of LDN gave me daily headaches and a similar psychotic anger as prednisone did. You have to be aware of this or you may find bad things happening to you and you won’t know why, but it is because your character will change around people due to the ldn. The only thing that helped stop this for me was reducing the nightly dose to 2.5ml or less instead of 4.5ml. I also thought it may increase the longer you have your mixture exposed from the day that you first made it. I can only get 50mg tablets so my tincture mixture can last a long time, I am not sure if there is some kind of toxicity that increases over time because of however many things may affect the naltrexone over time from the day you dissolve it into 50ml. Also I don’t boil the tincture when reusing it which may be bad.
Hello DD, have you tried the control dose of LDN not in water but a capsule. I know many people on LDN and none have reported this sort of a side effect. are you taking any other drugs with it? please ensure you refrigerate your tincture and perhaps boil the water before using it to make the tincture.
Best of luck
I have had severe UC for 5 yrs and have been on lialda, prednisone, remocade, humira, and now entyvio currently. I started ldn shortly after entyvio and I am feeling better but don’t know which is wking. Do u know if there is a risk of being in both??? I would like to eliminate what I can. Thx! Kristin
Dear Kirstin, Thanks for reaching out. I would suggest that you stop all immunosuppressant’s as they work contra LDN I don’t know if entyvio is an immunosuppressant. hope you are feeling better.
I have been on LDN for almost 2 years. Was originally prescribed it for fibromyalgia pain (took away about 60% of the pain) but as a great side effect, it put my UC into remission. I have taken all the oral meds, some suppositories too, steroids, etc… Have not done the biologics and refuse to do them or remove my colon (sister had hers removed at 19 due to UC).. Anyway, wanted to share that your source of LDN DOES MATTER! I started with Belmar Pharmacy in CO and my UC went into remission within 3-4 weeks. I then switched to a local compounding pharmacy that put it in capsules (vs tablets) and slowly my UC returned. I never made the connection but later switched back to the tablets from Belmar (they will mail them to you at no additional cost) and once more my UC went back into remission. I have taken starting with 1mg tablets, titrated up by 0.5mg every 5 days until I reached 4.5mg. I love LDN. I take it in the morning though instead of at night. I wish all drs knew about the positive benefits of it. If you are in the US and want the list of “approved compounding pharmacies”, see the http://www.lowdosenaltrexone.org website. Hope it helps everyone else out there as much as it’s helped me.
I was diagnosed with collagenous colitis eleven years ago. (I’m 56 now.) I suspect that having been prescribed PPIs for years brought it on. When I was offered the choices of treatment, I found them all horrifying and refused them all. My then-boyfriend was smart enough to do some research and found LDN. My gastro at the VA wouldn’t prescribe it, but my psychiatrist did. (He’s always open to new ideas.) It worked beautifully to stop my 30x/day trips to the bathroom. Whenever I come out of remission, I go back on the LDN again. I did a month ago after a course of antibiotics, but was out if Naltrexone. My pain management doc at the VA gave me the Naltrexone. Pain management docs are used to using most everything off-label (i.e., Botox for migraines), so if you have one, try asking him for your Naltrexone.
Dr. Osama, do you recommend removing Lialda out of the equation while taking LDN? Also, do you recommend tablets over capsules for LDN? I have been on Lialda for the last two years and it does not seem to be doing anything. I have been on prednisone many times and I believe it has effected my bones and has weekend me. I do not wish to touch prednisone again . I have taken LDN at nights for the last 2 months but in capsule (5mg) form. I am just wondering if it is the pharmacy (kaiser) that is compounding it differently than others. My gastrologist was against me getting LDN and wanted me to go on humira . I refused and he was not happy that I was taking on a different path based off of forums. I hear that it is a miracle drug and maybe I need to get it at a different pharmacy. Your input and others input would be greatly appreciated.
Hi Josh- I have the exact same questions as you. Did you ever get a reply from dr Osama? Any additional info is greatly appreciated! I’ve been on ldn for almost one month – started at 1.5mg for two weeks then increased to 3mg for next two weeks. Have not seen much improvement. Still lots of bleeding and many trips to bathroom with diarrhea. Have also been taking Lialda for over 10 years. Need to know if I should stick with Ldn, get off lialda? Next step is biologics which I don’t want to do. Thank you!
My 11-year-old son was diagnosed with UC in June of 2016 after months of symptoms. He has been on the SCD since Oct, and symptoms have improved a bit, but he still has diarrhea 5-7 times daily and up 1-2 times per night. He is under the weight he was before symptoms started. I asked his GI Dr about LDN, and he said there weren’t enough trials for children for him to prescribe it. Any tips on where I can get information to share with him to convince him to give it a try? Or, how to find a Dr. who will let us try it? Any known side effects in kids? I am a RD, and I want to try and get this disease managed as naturally as possible. So many people on my SCD message boards talk about the positive effects of LDN on UC, but yet I’m hesitant to give my son anything that could harm him. Any answers you may have are appreciated!
Can you get LDN by mail, or does it have to be prescribed?
Hi Shana – I used LDN in 2011-2012 to treat my UC that was brought on by minocycline to treat acne. Yep I am one of those poor souls that listen to my MD and wasn’t overly advised about the debilitating side effects. Anyway, LDN put me in remission & I stopped taking it for 2 years. My colonoscopy was pretty good, normal colon throughout except a few cm in the rectum showing mild active colitis. Hence, I will more likely start LDN again. It is a prescription can be perscibed as an “off-label”drug. I went to a sports and healing clinic in Edina Mn. Wonderful MD’s versed in healing the body. I noticed vivid dreams with LDN at first, I had more energy, hence the endorphins & made sure I took at night around 9pm. The medicine has a rebound effect that activates more receptors in your body to help heal itself, I believe this occurs in a 2 hr window & then it stops. It’s like pushing a reset button. Now for your son not sure if the drug can be perscibed for peds patients, however I always say less is more. I actually opened the capsule s of the drug & dumped out about 1/2, and I did very well. I figured this is my only hope. Perhaps a 2 mg of LDN or less can be prescribed or get the 4.5 and dump 1/2 out. I feel your pain for you & your son.
Hi Shana, Please do the following for your son. Start with LDN 4.5 mg please remember LDN is not age specific. it can be taken at any age it is safer than any of the drugs given for UC. also please give the following Supplements
Boswellia 500 mg 2+0+2
Curcumin 500 mg 2+0+2
Bael fruit 500 mg 1+0+1
Sachromices Boulardi 1+0+1 till the loose bowel subsides.
Hope this helps.
Hi Gretchen, I live in Lakeville and was thrilled to see you found someone in Edina. Can you please tell me the name of the doctor and clinic. Thanks for your time!
I was weeks away from a bio logic, having UC for many years and the last 2 being the worst in my 60 years. If you use a LDN doc, who has great reviews its 210 and 60 for the LDN, you can also get it with out a prescription from a web site that takes about 2+ weeks for 50. for 30 days..that said.. its made a major difference in my illness, out of flare in 3 days that I had been in for months, Id make an appointmemnt to speak to a LDN doctor and ask as many questions as you can.
I was diagnosed with Ulcerative Proctitis about 6 yrs ago. I stopped taking Mesalamine over 3 yrs ago, as the affected area increased by 50% while on the drug plus my hair started falling out. After stopping the drug, I started avoiding things like MSG, wheat, sugar and soy, and the affected area decreased by 30%. My gastro doc refused to prescribe LDN and was ticked off that I stopped taking Mesalamine. He literally told me to go get another gastroenterologist. I’m wondering if LDN would be effective for Ulcerative Proctitis like UC? If so, would you still recommend 4.5 mg or something lower like 1.5 mg? And, should I be taking other supplements in concert with the LDN or should I avoid them? I had a stroke about a year ago, so the cardiologist put me on Xarelto (20 mg) and Atorvastatin (40 mg), but the bleeding from the Ulcerative Proctitis has been non-stop ever since, so I’d like to do something different without risking another stroke.
Hello John, Firstly get yourself a new GI Doctor. LDN will definitely help you I do recommend that you start on 4.5 mg as well as take these supplements
Boswellia 500 mg 2+0+2
Curcumin 500 mg 2+0+2
Bael fruit 500 mg 1+0+1
These should sort out your issues nicely! Good luck
My 17 year old son was diagnosed in September 2016 with UC. He was prescribed the anti inflammatory Lialda and iron supplements. By March he had lost 20 pounds, was having 15 plus bowel movements a day(diarrhea), was severely anemic, and could barely attend school. I took him to Dr. Rabahr in Century City, California. He prescribed LDN (as well as steroids, Lialda, and a myriad of supplements). Within 2 weeks my son was turning the corner. Within 6 weeks, he was a new kid. Three months ago we wondered, along with the Dr.’s, if he would be able to attend college. Today, that isn’t even a thought. He is currently weaning off steroids and we will see if LDN is the miracle we are thinking it is. 🙏🏻 Hats off (and then some) to Dr. Rabahr.
Wonderful to hear best of luck.
My sons has been diagnosed with UC
He’s on a high dose of steroids but is still loosing blood
I need some advice
Can you help please?
Salam Zaida, sorry for the late response I check this page very little. What is the latest on your sons health please feel free to call me on +923018555592.
Hi, i wad diagnosed with UC in 2014 and prescribed Imuran, Mesacol and steroids. Once in remission GI stopoed the steroids.
I am now flaring again and am reisiting the Imuran. My holistic Dr has prescribed LDN (3mg) / day.
Is it OK to take whilst on Mesacol and Steroids ir should I reduce something? And can I start immediately on 3mg and stay on that? The Dr has only given me 20 tablets as though that may remove my symtons in that time? Is that possible?
Hi my name is Eric, I have been diagnosed with ulcerative colitis and have had symptoms since 25yrs old and I am now 52yrs. It’s been a nightmare. I’m not on any drugs for my colitis and I’m bleeding again. I have a prescription for 50mil naltrexone hydrochloride ups made by mallinckrodt. I have made up my first batch of LDN by dissolving the 50mil pill in purified water. Just today I started taking 2.5 mils of Vancomycin hcl as doctor found c-diff in my stool. Can I start the LDN while on the antibiotic? What dose of LDN do you recommend? I have been researching LDN for sometime now and hoping for much needed relief. Thank you Eric
Hello, my gorlfriend has just started 2.5mg of LDN but it has caused her to have more pain throughout the night. Tonight will be her 3rd night. We were told the first 3-5 days could seem “worse” but to stick it out.. is this something anyone else has heard of?
My 4.5 mg compounded LDN reaching me tomorrow.
The supplements advised by Dr. Osama will see my house on 20th.
Will post my experience in due course …