Meet Stefan (The first writer on the site from Iceland!)
My name is Stefan Steinsen and I was born in Iceland 45 years ago. I’ve been married for 23 years and we have four children, three girls and one boy. Our oldest daughters gave birth to a baby boy and a baby girl this year so we are proud grandparents. I took my undergraduate, along my wife, in Alabama, US. Currently I’m taking my Masters in EU Law & Business in Denmark. I was diagnosed with UC earlier this year and after going through hard times and many toilet trips the disease is sort of under control today with me taking two Asacol suppositories each day. I have to watch my diet and only drink beer and red wine during the weekend unless I want to increase my toilet trips. By the way I love beer and a glass of red wine. Usually one day a week I tend to flare up a bit with many toilet trips but I think its only to get rid of the leftovers.
Here’s some more abut Stefan:
I’ve been with the same woman since I was 13 years old or for almost 32 years. I used to play soccer (football in Europe) and played on scholarship for Unviversity of South Alabama in 1990′s. I come from Iceland and I love to play golf. Sometimes during the summer in Iceland I play up to 25 times in a month. Reason being, we only have 4 months to play because the other months we have winter and dark outside. I love sports and a big fan of the NBA.
LDN or Low Dose Naltrexone
Since being diagnosed I have been very interested in what steps I need to take to get better. One of the first thing that I changed was my diet and I almost immediately found a big difference. I’ve been doing my own research and reading everything I see, whether articles or something on the world wide web. Just recently I stumbled upon a article about LDN (low dose naltrexone). This medicine apparently has worked extremely well with different diseases, Crohn’s and Colitis being one of them.
There is an interesting event going on in the worldwide online patient community. There is a mass movement driven by people, not pharmaceutical corporations, striving to get the attention of mainstream doctors for the use of the medicine LDN (Low Dose Naltrexone) for effective healing of a variety of conditions, sometimes previously considered untreatable. The ´problem´ is no pharmaceutical company has the sole rights to profit from it since the immuno-modular effects of it where discovered long after it was marketed and the patent has become free. So millions of dollars needed for research and marketing have not been available. This is slowly changing though and one research from Stanford University (fibromyalgia centered) has recently verified what patients have been putting forward. The effect from it does not seem to fade even in known instances of 20 years of use. It is as toxic- & side effects free as medicine can get. Given in almost homeopathic proportions before sleep, just about when the body is about to evaluate it´s need for the immuno-modeling hormone endorphin, it increases the amounts of certain immune-system-directing type of white blood cells by up to 300% Considered one of the greatest medical discoveries of the last century, you won´t hear about this from your usual doctor – yet.
In today’s world of specialized medical care it may feel strange that a single drug is helping in so many conditions. But as you understand how it works it soon becomes clear that this is no ordinary medicine. I urge all of you to do some research on your own and ask your doctor about LDN.
Here are some links to some more information on the topic:
http://www.lowdosenaltrexone.org/gazorpa/History.html
http://www.lowdosenaltrexone.org/ldn_and_ai.htm
http://jeffreydach.com/2009/04/13/low-dose-naltrexone-ldn-2-jeffrey-dach-md.aspx
written by Stefan
submitted in the colitis venting area
December 31, 2012 at 7:59 am
Hi Stefan,
This is excellent news! I have been trying to get my hands on LDN for months now. Doctors here in the US refuse to think outside the box and won’t prescribe anything that does not have at least 15 different side effects. As far as I have read, the only side effect of LDN is some vivid dreams for the first few weeks, and that’s it. I read somewhere (I don’t remember where), that LDN works especially well with a change in diet. I’ve recently fired my GI precisely because he was unwilling to prescribe LDN, and am in the market for a new one. Thank you for raising awareness for this promising drug!
December 31, 2012 at 11:22 am
Is LDN the New Cure for Colitis?
Well, I can answer that very simply: NO! haha obviously, because you can’t cure colitis but can get it into remission.
I tried LDN this summer and saw no UC improvements unfortunately. There are no scientific studies for it in UC and I’ve only seen one for Crohn’s and no other studies have come after it. I made my LDN from naltrexone tablets just because it is very hard to get a prescription for it… almost impossible. I asked 5 different doctors and they all said no.
I do know of one person that takes it and she said it keeps her in remission. So it’s like any medication really… except this is like a black market drug to get. The main side effect most people get from LDN is insomnia and I definitely had that. That made it very hard to take because I enjoy sleeping… especially when I’m so sick from flaring.
December 31, 2012 at 11:49 am
Joanna,
The fact that there are no scientific studies means absolutely nothing. As Stefan points out, there is nobody to fund a study, because no one stands to profit from it. People take a lake of scientific studies to mean that it doesn’t work, when that is not true at all. A lack of scientific study is… precisely that — a lack of studies. What dosage of naltrexone were you using? What was the filler? I am absolutely not saying that LDN is a cure for colitis. BUT, as in the case for the dietary effect on UC, when people use the argument that there are no studies to justify that it does not work, this is misleading. No evidence of LDN being effective is very different from evidence of LDN being not effective.
December 31, 2012 at 12:51 pm
kk, i get what you mean. i just think if the drug was making a noticeable difference, then more people would be using it or at least know about it. my GI doc said he used to prescribe it (he tried it also) but said the success rate was so low that he stopped using it in his practice. i mean, i’ve heard of WAY more people doing well on, say, mesalamines or remicade than i have of LDN.
i was on the only dosage that was technically proven to be helpful- 4.5 mg. the tablets i had were made with lactose. i worked up to the dosage but i’ve read if you go over 4.5 mg, then it won’t work.
December 31, 2012 at 4:20 pm
@joanna
I agree with what you are saying. I simply don’t have any reason to believe that all doctors are in a conspiracy to prevent cures or perfect treatments for their patients. Drug companies spend billions on research in an effort to find cures so I don’t think all of them are hoping to keep everyone sick either. They could charge amazing amounts for cures and get them. They don’t get to keep making money off of people with one particular medication because so few can be taken indefinitely. Drugs have saved the lives of people whether it be from cancer or antibiotics that stopped an infection from killing the patient. If LDN can help someone, that is great but I speculate that if it was cheap to make and provided benefits they would still happily sell it to the market. They do it now with untold amounts of medicines and drugs. Think of how cheap prednisone is. Dirt cheap and highly effective. Even my visit to the allergist/immunologist proved again that the disease is incurable for most. He did say a very small percentage do ‘burn out’ on the disease and it simply goes away. If they happen to be taking something or doing something at the time, it could be mistakenly attributed to that instead of the great fortune they have being in that part of the bell curve. Thanks for posting your thoughts!!
December 31, 2012 at 5:07 pm
Great post, Ordinary!
Pred is very inexpensive, and highly effective in alot of cases. LDN is also dirt cheap. Maybe not as high up on the benfits chart as pred as yet, but still there…
Happy new year to you:)
December 31, 2012 at 1:39 pm
I agree with Joanna,
Not to say that it may help you..I think it is worth a try…it works differently than most UC type meds…used for all kinds of things from detox, to pain to Ms…studies are very limited and small. It is better to read blogs of individuals actually using it. My brother’s friend is a pharmacist and he talked about it with me over a year ago. I guess it puts it in the ranks of other meds and natural remedies including SCD! As we know with UC it is similar but different for everyone or it would be cured or be in remission by now . It is not a one size fits all disease! So best of luck if you try it and keep us posted….we’re all looking for the magic “pill” but too realistic to put all our eggs in 1 basket…not to mention your body will build up an immunity eventually…most likely.
best, Shelly
December 31, 2012 at 2:44 pm
You have heard of way more people doing well on Mesalamine and Remicade because they are prescribed to every UC patient. LDN is not. Therefore the sheer number will be overwhelming. Furthermore, LDN has none of the side effects that Mesalimine and certainly Remicade, has. It baffles my mind that doctors still will not even _try_ to prescribe LDN, when it has no side effects, but have no qualms about putting people on prednisone or Remicade or Humira. Yes, LDN may not work for everyone. But at least they will have no side effects from it! And, you can get a months supply for less than $40! Also, using lactose as a filler may defeat the purpose for those of with UC, as we already struggle with lactose intolerance and for those on SCD it is illegal.
December 31, 2012 at 3:08 pm
that’s what i’m saying. if LDN is such a good IBD drug, then why isn’t it being prescribed by more doctors? it still costs money to get/make. i figure doctors/researchers wanna figure out the cure to diseases because then they will be famous.
yeah, it sucks the filler is lactose. that’s the only way it comes in tablets. it’s such a miniscule amount though since the tablets are about a 1/4 of the size of a dime. one tablet gives you 11 days worth of LDN if you are on the 4.5 so the filler shouldn’t be a problem in most people.
December 31, 2012 at 4:37 pm
What about the clinical evidence? A search of PubMed for “low-dose naltrexone” reveals only pilot and preliminary studies. The quick bottom line is that there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial, let alone a consensus of rigorous studies. What we do see is a smattering of pilot studies for a few diseases.
It’s job is a different approach to treating different maladies. And yes, there are side effects to ALL meds including natural remedies.
It is also very hard to regulate and find the right dose and best means of administration for each person. These are all facts.
January 3, 2013 at 8:42 am
Where do you guys order the Naltrexone from?
December 31, 2012 at 3:25 pm
Hi Everyone!
I have been taking LDN for about 8 months. The reason that I never mention it in any of my posts is because I was already in remission when I started it. Because I weigh 125 pounds, I am only on a doasge of 3.75. There was a weight calculation on the official LDN website with the 4.5 dosage pertaining to a 150 pound person.
Anyway, I love the stuff…not because I think it’s helping the UC directly, but because I sleep like a baby on it! I have never slept so well in my life, and I know how important sleep is for our bodies, including inflammation levels, thus, perhaps ultimately helping my particular UC case.
It is so true that this ‘condition’ is very unique and individual. What works for me does not necessarily work for someone else, as I have discovered time and time again. I wish it were the case, but it just isn’t.
Just my two cents on LDN. I love it for sleep. It did not cause insomnia in me…quite the opposite. Perhaps it is the dosage that I am on. I have been on 3.75 since I started, and it has never been increased because it works so well for my sleep!
Cheers,
Bev:)
December 31, 2012 at 4:43 pm
I wondered if you were still taking it. Great consequence/positive side effect! I guess that plays off its original use!
Always good to add your 2cents..worth a billion!
Oh that first paragraph on my last post was a quote. Fyi all
Happy and Healthy New Year!
Best, Shelly
December 31, 2012 at 5:03 pm
Shelly!
You are the most wonderful gal…
You have a superb night and also a fab 2013!! …And every other year after that too! LOL…
BTW…your two cents are always invaluable on here. I value YOUR opinions, thoughts and info so much on this site as I’m sure others do!! Always so well said and thought through. Your posts are not only smart, but a joy to read as well.
We love you Shelly!!:)
December 31, 2012 at 6:19 pm
It takes a UC village! 1 million% we can all agree on probiotics, less stress, exercise, and a positive attitude! OK stubborness, tenacity and appreciation of all the little things!
December 31, 2012 at 5:50 pm
hey bev! that’s so great it helps you sleep. ive only heard of people saying it keeps them up so i wonder why it works the opposite for you. what made you start it since you were in remission?
i did the same thing as you at first with calibrating my weight to the LDN dosage. i started at 1.5 and worked up to 4.5 kind of waiting for benefits to happen… which didn’t. i think the calculator said i would be at 2.75 or something. the first 3 weeks were the worst. i must’ve slept like 1 hour a night and a few hours in the day after it was out of my system. i was going insane.
i know when i went off of it though, i could feel pain much more strongly. i can’t remember the reason behind this. just wanted to warn you in case you stop!
January 1, 2013 at 9:44 am
Hey Joanna!
I know! I don’t know why it affects my sleep ‘so well’. Isn’t that something? Because I’d read alot of stories about people not being able to sleep, who took it as well. I was waiting for the insomnia, but instead, it made me so sleepy that I couldn’t stay awake! Joy to the world!!
I just wanted to take it to see if it would do anything at all for the UC…even tho I was already feeling pretty good thanks to the probiotics and L-glutamine. I remember having alot of arthritic type pain, and I was probably hoping that it would help that…which it sort of did I guess.
What kind of pain came back when you stopped it? I don’t think I’ll be dtopping it because of the sleep affect it has on me, nor will I be looking to increase the doasge to 4.5. Why, right, if it’s making me sleep so well at the 3.75 dosage?
Cheers, and a very happy new year to you too!! I hope 2013 is the year you finally finally your ‘thing’ that heals you!! You deserve it, my friend!!
Bev:)
January 1, 2013 at 10:09 pm
Hey Bev,
you always said u been in remission for the longest do u think its beause of this LDN ??? also did u get a priscription for it and was it pity easy to convince your doctor ….i wonder if i mention it to my doctor what would she say…i would also like to try it….and whats the different between LDN and prednisone…..sorry for soo many questions …looking forward to hear from you and happy new year !!
January 1, 2013 at 10:57 pm
You know, Hammad, I’m not entirely sure! I was already in remission before I took the LDN…but I have stayed in remission for almost a year now.
I really think it is the probiotics and L-glutamine, but perhaps the LDN is also helping. I wish I could tell you for sure.
March 19, 2013 at 9:52 pm
Hi Bev,
I’m glad it seems to be positively working for you Bev, so if it ain’t broke don’t fix it. I do think the L-Glutamine and pro-biotics are probably having more of an impact. I’d give Bupropion a shot, it’s good stuff and it was extremely effective for me, as effective as starting with a high dose of Prednisone or Remicade.
I also tried Low Dose Naltrexone for almost 3 months, although I can’t really say how much of a positive impact it had. I found out about it after I was already doing the fecal transplants and already was already well on the road to recovery. Then I needed to wait until I stopped taking Prednisone to start so I ended up first re-starting Apriso and starting Bupropion and Silenor first, which led to the spontaneous remission and my “a’ha” moment of declaring victory in my mind. So my symptoms had already greatly improved by the time I started taking LDN at 4.5 mg since that is how they did it in the one study I had found. I ended up getting my prescription from a psychiatrist who has been practicing for nearly 40 years, who shrugged and said “it can’t cause any harm” as he wrote the script. I ended up getting prescriptions for both 30 of 50 mg tablets with 5 refills (almost a year’s supply of 4.5 mg) for a $10 co-pay at CVS and got 30 of the 4.5 mg as capsules (also 5 refills) from a compounding pharmacy in New York City that was listed on the LowDoseNaltexone.org website, for about $25 plus shipping.
I really can’t say if LDN did anything for my case of Ulcerative Colitis, since I was already getting better from the combination of other treatments. I think the fecal transplants plus the Bupropion did it, although it did cause substantial sleeping difficulties if I took it at night. I even stayed awake all night with no sleep a couple of times in spite of taking two different sleeping pills Silenor and Ambien CR, until I started taking the dose around lunch time instead. With morning or mid day dosing I actually liked the slight mood elevating effects I think it had, which make me wonder if this is why LDN seems to help, maybe in a way similar to anti-depressants or anti-anxiety drugs or even like Bupropion. However by late November I gave up LDN. Since it just didn’t seem necessary anymore.
March 20, 2013 at 7:55 am
I know what you’re saying, Michael. I can’t say that LDN actually helped the UC. I too, was already in remission when I started it. I’ve been on it for a year, and like I said…I want to stay on it because, unlike most people, it really helps me sleep! It is a wonderful side effect that I do not want to give up…lol. I never had a problem sleeping before, really, but now, 10 minutes after taking it at bedtime, I have the most fantastic tried feeling, and I am out cold!
I can’t believe that it has no other side effects for me, because I am extremely sensitive to all medications. I love LDN…my doctor was floored when I asked for an LDN prescription renewal, because I NEVER want meds!
Cheers
December 31, 2012 at 5:22 pm
Just an FYI re LDN- there is a yahoo group u can join that discusses all the uses for LDN in various illnesses( don’t remember exact name but can find if go to yahoo groups). It has also been helpful for autistic kids with gut issues.
December 31, 2012 at 6:28 pm
It would be nice to hear lots of anecdotal stories because of the lack of studies though.
Happy New Year all!
December 31, 2012 at 7:15 pm
Hi, Stefan. I used LDN earlier this year for a few months and it was prescribed by a natureopath. Besides being in a UC flare then, I also was in an arthritis flare. I couldn’t believe how well it helped my arthritis (psoriatic)! It has to be compounded so my insurance wouldn’t pay for it and it cost me $40 a month to take it. Whilst this doesn’t sound like much, it is when you’re on disablility. I also researched buying it on the internet and found a recipe for compounding it yourself but I can’t remember if I determined if it was cost effective or not. I pay for a lot of supplements that seem to help my UC, btw, LDN didn’t help my UC, which was a bummer and like Bev, I was on a 3.5 dosage. My concern for taking it was I was told NOT to use any pain killers while taking it and what if I’m in a situation where I need to take pain killers, just saying. I didn’t find that it kept me awake but I also have chronic fatigue and am being treated for that so my natureopath gave me sleeping pills, too. Are you using LDN and is it helping? If anyone wants to try it, I suggest you find a natureopath to give you a prescription, Walgreens compounded for me. Good Luck! Happy New Year to everyone!
January 2, 2013 at 11:50 pm
Stefan, sweet stuff! Never heard of any of this! This is legit, Im really going to look into this!
I’m always looking for new ideas to help me UC. Im still sadly on lialda daily, 3 per day, but I started to takse 2 the beginning of the new year, so hopefully I can get down to only 1 or 2 a day and eventually zero! Im also a avid futbol fan! I still like to play it, sadly here in the midwest their is a bit too much snow right now haha. I really want to go the Brazil 2014 world cup! That would be one heck of a trip! I read you still like to drink on weekends? I actually gave up alcohol, been nearly 2 years now since I had a sip, it was hard at first, but I still go to the bars and have a good time, usually just order a beer and carry it around the whole night…. keeps everyone from asking me why Im not drinking…. I do partake in a little medicinal marijuana on weekends and it does not bother my UC. I never did it prior to having UC, I was always a drinker, but definitely prefer it over alcohol. Not sure if its legal for medicinal purposes over their in Iceland or if you ever try it, but highly recommended over alcohol.
Hope all is well sir!
Best of luck and happy new year!
Johnny Drama
January 24, 2013 at 6:48 pm
I have been on LDN for the past 2 months. It seems to slow my UC down better than the Asacol ever did. I heard about the drug from a Naturopath doctor and decided to give it a one month trial. Slowly things started to improve and have been holding steady so long as I watch my diet like a hawk. I had a hard time sleeping the first night on it but after that I had no other noticable side effects. My family doctor wanted absolutly nothing to do with it and still refuses to prescribe it, but then again he doesnt live with UC day in and day out. Best Wishes!
January 25, 2013 at 9:05 am
I hope LDN continues to improve your UC. Unfortunately, it didn’t help mine but it sure helped my psoriatic arthritis! It was amazing. The main reason I stopped taking it is because my insurance wouldn’t pay for it and I couldn’t afford the $40 a month is cost me, especially because I do spend a lot on supplements such as probiotics that help. There is good help out there not in the form gastro prescriptions. It’s funny how doctors refuse to believe in LDN and natural cures.
March 19, 2013 at 10:15 pm
Hi Maggie,
If you want to keep trying LDN, my insurance covered it as the lowest level generic drug at $10 for 30 pills, which could last you almost a year. If you do this you can crush up the pills and dissolve them in 50 mL of water (1 mL per mg of Naltrexone and administer a small amount using an oral syringe. Interesting that LDN seems to help treatPsoriatic arthritis. Have you considered Bupropion, there has been some research which has identified it as a TNF-a inhibitor like the Biologic drugs so maybe it would help there too.
April 30, 2013 at 8:14 am
That`s because the big drug companies lord over them and their practices. If they stopped giving out their harmful drugs, then everything would fall apart.
March 20, 2013 at 2:13 pm
Hey, Michael K Hurst,
Thanks for the info. I did read about compounding your own LDN and buying the pills on the internet. How did you get your doctor to prescribe the pills in it’s whole form? From what I understand, 50 mg dosages are for drug addictions. It really did help my arthritis–I would go on it again just for that. I’ve never heard of Bupropion, I’ll check that out!
April 30, 2013 at 11:39 am
You can order LDN by mail from a compounding pharmacy for about $25 for a month’s supply, however dissolving tablets in water is the cheapest option. I simply mentioned Naltrexone and the doctor just wrote it for me. Psychiatrists are much more willing to prescribe than GI doctors for example. 50 mg is the FDA-approved dose to treat Opiate addiction and alcoholism and is the only strength it is manufactured in. However doctors often prescribe drugs off-label. Low dose Naltrexone is a rather extreme example of that in terms of how differently it is used than what it was approved for.
Unfortunately I can’t say if LDN made much of an impact for me, because I tried LDN at the tail end of my illness after already using fecal transplants, Bupropion, Apriso, mesalamine suppositories and Silenor to make great progress. I tried it for about 3 months. In my experience I had terrible insomnia on 4.5 mg of Naltrexone taken at night where I sometimes could not sleep at all even with 12.5 mg of Ambien CR and 6 mg of Silenor (Doxepin.) By taking it around 12:00 noon, this proved to be less of a problem and Naltrexone seemed to energize me and elevate my mood slightly.
Bupropion (Wellbutrin, Zyban) is an anti-depressant that is also approved for Seasonal Affective Disorder (depression) and prescribed for smoking cessation. A study was done years ago to see if it could be used to treat Crohn’s Disease, however no conclusive results were ever published. Try a search for Crohn’s Disease or Ulcerative Colitis and Wellbutrin or Bupropion and you will find some information. In my case the addition of Bupropion to my treatment process helped lead to an almost spontaneous remission which then lead to me effectively curing my case of Ulcerative Colitis. I have now been off all medications and been symptom-free since December 2011. I go into more detail about my experience on my website http://www.FecalTransplant.org
Michael
April 29, 2013 at 3:18 pm
Hello Everyone!
I
April 29, 2013 at 3:42 pm
Hello Everyone!
I am a 16 yr old girl named Sloane Viner. I have had Ulcerative Colitis for over 2 years. I`ve also had my my fair share of hospital visits, sever pain, C-DIFF twice, weight loss, potty trips, diarrhea, anemia, sucky drugs/ side effects, and pointless doctor visits. When I first started bleeding we went to a GI and got a UC diagnostic. after 1 week of supplements and a strict GAPS diet, the bleeding, gass, urgency, and pain stopped. BUT, the GI`s wanted me on APRISO in case the bleeding started. I WAS FINE W/O DRUGS….BUT THEY WERENT HAPPY ABOUT IT!!!!! Ive went on messalamine only to end up in the hospital and hemolize. I was down from 130 lbs to 85lbs. My Gi`s put me on 90MG of PREDNISONE. I became WAY over weight, lost all my brains, and ate more than my 19 yr old brother. I stayed in remission for 2 months until the bleeding came back. and then i had C-DIFF and CANDIDA. After much more crap happening and hospital stuff/evil medical GI doctors and the likes, this year my lovely mother found out about LDN and Hyper Baric Oxygen Chamber, and SCD diet. With all 3 of them put to gether, along with VSL#3, the bleeding has stopped and I`m completly normal for the first time i my enire life! I`m finally free of all the pain!I also sleep ALOT as in 10-13 HOURS a NIGHT!!!!IDK why, but i never got the strange dreams, and it actually imporves my sleeping habbits. OMG my life has returned becaue of LDN! We got a cream of LDN from a compounding pharmacy and with a prescription from my Buni(MY ENT doctor Grandma). Basically, my point is, L_D_N wORKS, BUT YOU NEED TO DO IT WITH PROPER DIET.
April 29, 2013 at 5:46 pm
I agree with the sleeping part…I love LDN for that!! I sleep like a baby on it….only in a totally GOOD way!!
I love that side effect. And, in the morning…you feel completely great and normal.
Bev
April 30, 2013 at 11:42 am
Sloane,
Try a course of fecal transplants (anywhere from 5 days to possibly up to a month.) They are increasingly used for c. diff and increasingly for Ulcerative Colitis as well. It worked for me for UC when everything else had failed and now I don’t need to take any drugs, pro-biotics, special diets or any more of the poop enemas and my UC has been gone since December 2011 after over 12 years of illness.
Michael
April 30, 2013 at 12:34 pm
Hey Bev,
I have some questions for you regarding the supplements you take. Can you please email me so we can chat a little? My email is tillsontracy@yahoo.com
I hope to hear from you!
Thank you,
Tracy