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Crohn's Disease Forum

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My 13-year old daughter was diagnosed with Crohn's fall of 2013. She is also food allergic and celiac. The GI first put her on prednisone, which caused her to have stomach aches, loss of appetite, and depression- the very things we were trying to fix. So, we stopped prednisone and followed the elimination diet by John Hunter. We were able to get all her gut symptoms to resolve by following a very strict diet. And she started growing and gaining weight. Her labs became normal, except for fecal calprotectin. It was slowing decreasing over 6 months as she stayed on her diet. Then, we started ldn and within 3 months, all her labs were normal. Her calprotectin went down 500 points. It took about a month on the ldn for her to really start feeling better every day. At that point, she was able to start expanding her diet. And now her diet is larger than it's ever been. And she feels better than she's felt in years with no gut trouble at all.

I was also diagnosed with Crohn's spring of 2014. I initially tried aprisa and uceris. These maybe helped to get things under control. But, when I saw my daughter's great response to ldn, I stopped those meds and am now trying ldn. I've been on it for 2 months and feel almost well. I also have ankylosing spondylitis which the ldn has helped tremendously. So, I guess that you could say that I'm a firm believer in ldn.
 
Hi everyone!
I have a quick question. I have heard that if you have any type of yeast infection in your body that it can totally interfere with LDN. We realized my daughter has a bad case of thrush in her mouth. I am wondering if this is what's causing her flare up?
Has anyone heard of this? Also has anyone heard ofa cure for thrush called Lufeneron? I think that is the spelling buti might be mixing it up.
 
I had thrush and a yeast problem throughout my body when I started LDN. I was put on Fluconazole (Diflucan) for my first two months on LDN.
 
Hi,

I had my check up today, following a routine MRI scan, and the consultant says he has been amazed at my results. My two fistulas have healed and although there is scarring, I seem to be doing well. He was anti me taking LDN and he says that my results have opened his eyes to the possible success of LDN.

So far so good BUT, I noticed on the latest prescription that he has written for me that the drug prescribed is Naloxone 4.5 mg. I'd this the same as Naltrexone, and why would he have changed the prescription? Anyone any ideas please. I'm a bit worried to take this until I know the reasons.

Thanks

Sally
 
They are definitely different drugs -- Naloxone is typically used to bring back people who have OD'd on heroin, when used in it's proper dosage. Not sure what a low dose would do, but it's definitely different from Naltrexone. I would call and confirm that your doctor didn't get mixed up, just in case. He might have just written the prescription down incorrectly.
 
Hi Jesse,

Thank you. I have been doing some research since I posted, and it seems they have a similar action but the side effects of Naloxone are many, unlike Naltrexone, which I am comfortable with. I am wondering whether Naloxone is a cheaper drug. It was strange because the specialist started to write naltrexone, and then crossed it out and referred to some manual. I didn't notice what he did until I got home, but I believe it was deliberate.

I wonder why he didn't mention it to me? Very odd indeed.

I have left a message for the hospital to call and discuss this, and hope I can revert to LDN.

Sally
 
Hi. I hope so, but in the UK we seem to use cheaper drugs if possible all the time. I will let you know. I just hope I haven't got a fight on my hands!

Thanks for responding.

Sally
 
I would most definitely ask your doctor about his writing the prescription for Naloxone
instead of Naltrexone. Clinical trials done for Crohn's/Colitis were with low-dose
Naltrexone....not Naloxone.
 
Hi,

Yes, that is why I'm worried. I do think it was deliberate, and certainly he should have explained. Luckily, I still have a reasonable supply of LDN, so at least I can take some time to try and get the prescription re-issued. I am just hoping that I don't have a problem when I speak to his secretary to enquire what on earth is happening here.

I believe these drugs are similar, but that doesn't seem good enough to me.

Sally
 
i would insist on not being a trial of "one" for your doctor and stick with the LDN that seems to be working for you and which has been used in several trials for crohn's and other autoimmune diseases.
 
LDN never caused nausea for me. I've been taking 4.5 mg. caps at bedtime for many years. I must say that I have never had any side-effects from LDN, and that is one of
it's beauties. I'm not sure if stopping LDN for a while would be a good thing or maybe
help keep it's effectiveness. Anyone know if that is necessary?
 
Has the dose recently changed? We have our son moving up very, very slowly from 0.5 to 1.0 then 2.0 now this weekend we started at 3.0. His functional medicine doctor wants him to end up at 4.0. So far (knock on wood) we haven't had any issues but I'm wondering if you suddenly increased if that would cause some nausea?
 
Been at the same dose for two years. However we did get a new batch about a month ago. Wondering if there is a link.
 
Hi Kim, just wondering, how is your daughter is doing now? I myself am thinking about starting LDN. Do you think it's worthwhile to get my LDN from Skips, or long as I tell my compounding pharmacy the specifics that it should be fine?
 
Mina,
Go with Skips. They know how to make it correctly. They make sure it is fresh. I noticed an immediate difference between their product and the first place we got it from.
We are starting a new plan with my daughter,
Increased her LDN ago 6.0mg for one month then 4.5mg
Add in alpha lipoic acid and increase her D, L, Phenylanine
We are going to repeat her fecal calp. wean her off prednisone repeat her fecal calprotectin in two months.
 
Thank you, will do! I hope that definitely works for her, I know how it is to feel so well then have Crohns show back up. I was diagnosed back in 2006 while pregnant with my first child and now my second born is starting to have belly woes after eating, praying it is nothing. Is she on a particular eating plan? I'm starting Makers Diet over since that and Wild Oregano Oil put me in remission the first time. Feeling too good and a weekend of too much wine sure took me out of remission!lol hope the LDN will give me beyond a boost. Positive thoughts for you guys. Hang in there, she will get better!
 
What is the makers diet? I have not heard of that one? We are trying diet changes. Sticking with bland diet. Lots of broths and rice. Potatoes. Trying to avoid gluten products. It is so tough!
 
It's a book by Jordin Rubin about lifestyle diet changes. Good read, only thing I didn't give up was my bacon. I've taken some principles from the SCD, AIP, GAPS, and the IDB remission diet ( that's where I got the wild oil of oregano protocol from) and have tailored them to my particular case of Crohns.

My enterocutaneous fistulas healed with the wild oil of oregano protocol and those diets plus some supplements. It calls for probiotic supplementation, but I'm really sensitive to probiotics even homemade yogurt , so I used the idea from the GAPS diet and slowly added in fermented veggies once I started feeling better. I also had a problem with candida overgrowth, so I started drinking lemon and ginger tea with manuka honey, and taking the Braggs ACV in the morning, noon and at night. Helped tons.

I did 3 days on the bone broths, then started to add stewed meats and soft veggies back into my diet. Once I didn't feel pain with eating I eased into phase 1 of the makers diet which focuses on getting the inflammation under control. It eliminates all starches even rice and potato (theory is to starve out the bad bacteria) but adds them back in in the other phases.

So much diet information out there that I chose them all and followed the basic principles that they all have in common, and listened to my body.

It is tough, but she'll get through it! Baby steps , it what I've been hearing all week. *sigh* I need my body to catch up to my mind! :D
 
Hi,

You are so lucky in America. Here in the UK, at least in my area, I am the only one on LDN, and so when I come to get a repeat prescription, it is from the same batch, currently with an expiry of February, 2015. I have been using the same batch since August. No matter how many times I ask for it to be freshly compounded, it isn't, until I have used up their supplies.
Despite that, the LDN appears to be working for me and I am in remission and now seem to have been able to return pretty much to my usual diet, although I try to keep it as low residue as possible, without any problems. Because my small intestine is so narrowed, I try to avoid food which is hard to digest as I am paranoid I will have a blockage.

I would be interested to know what the Makers Diet is too, just in case I have another flare.

Good luck everyone. Hope the LDN works for you too.

Sally x
 
Sally it really does help, just google it and tons of information should flood your screen.
But uggghhh on a side note, my GI Dr. said that I have to wait for an appointment with her before she prescribes anything which is not until the middle of November :( She also said that it's not standard therapy so I don't think she's trying to write a prescription for it... Soooo frustrated with this GI, time to switch.
 
Hi,

Thank you. I will have a look.

As for the LDN, my GI didn't want to prescribe it either, so I printed off the details from the website and took it with me. He said he hadn't had any experience of it, but i stuck to my guns and said if it worked for me, it could help others, abd that I was prepared to be a guinea pig. He now says that I have opened his eyes, and it appears it could work. I hope you can persuade your GI to write the prescription.
Good luck

Sally x
 
MinaBgood,
We had to convince our GI as well. We also printed off articles and brought them in. Took some convincing but our doctor finally agreed.
 
For the last 90 days, I've been taking 4.5mg Naltrexone upon retiring. Unfortunately, I don't think it has done anything for my UC symptoms.

My source for the drug was Ian Hewitt (Phuket), since I couldn't find a local prescriber. I drop 1 50mg tablet in a 500ml bottle of water and take 45ml (edited...used to say 4.5ml, which was a typo). I keep the bottle in the refrigerator and also squeeze the bottle to remove the air. I don't know if there is any oxydation risk, but I figured its easy enough to remove the air.

Besides LDN, I'm taking only mesalamine, both orally and rectally. The disease symptoms have been, and are, basically under control, but I still occasionally have slight bleeding. These symptoms have been about the same over the 90 days with no improvement in symptoms noticed. I wish I could report success, but this n=1 should be recorded as a "no improvement" result.

I plan to continue using LDN for another month, then stop and see if I can detect a difference in symptoms.
 
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I didn't have much success when I took it by dissolving the 50mg tab, I found a compounding pharmacy and felt the difference taking 4.5mg capsules. Good luck!
 
Was 500 ml a typo? If not, and you meant to get 4.5 mg of LDN, then you either have to take ten times as much of your homemade solution or only use 50 ml of water with the next pill. 50 mg / 50 ml of water gets a solution with 1 mg/ml LDN.
 
Hi everyone. I was dx with Crohns in March of this year. Was put on PREDNISONE n PENTASA. It workd up to a certain point n then came to a halt without complete remission. GI Dr wantd to put me on Remicade n Imuran tgether. After reading the side effects of them, I decided I didn't want to take them. I researched other options n came across LDN. GI Dr had never heard of it n seemd reluctant to research much less prescribe.

Does anyone know first hand about the side effects of Remicade n Imuran? My concern is the possibility of cancer due to the extensive history of cancer alredy in my family.

Also, if anyone can refer me to a dr in my area who will prescribe LDN it wud b greatly appreciated.
 
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My GI wouldn't prescribe LDN either. Go to lowdosenaltrexone.org, you should be able to find a doctor willing to prescribe it for you.
 
Finally I think there could be light at the end of the tunnel. I got LDN prescribed by my doc last week. An OBGYN of all people, after we talked about my history she stepped out the room and even brought me a pamphlet to read about it. I was shocked. She also recommended a new GI, she felt I needed fresh eyes. She recommended I get tested for SIBO, start Xifaxan while I wait for those results come back. Then supplement with high dose vitamins and probiotics after the antibiotic...After surgery I started flaring out of the blue, diarrheah (which I didn't have until 2 weeks after surgery), couldn't eat anything without reaction, unbearable gas and bloating...lost even more weight.

But I called Skipps and finally started the LDN last night.

The light is that before that visit, a dietician from my TPN supplier came out to my house and did a full work up. Spent an hour and a half with her. She upped my calories, protein(so my wound will heal), and will increase all vitamins to therapeutic until I can maintain it myself through regular diet. This is welcomed after the last 2 months off the wait and see approach my docs have been taking.

Goal is to get me all healed up and then get me off TPN and get this picc line out! I hope LDN gives all of this a boost. Currently on a higher fat, lower carb/no carb no sugar diet.... Gonna starve these pathogens.
 
Deteoj said:
Was 500 ml a typo? If not, and you meant to get 4.5 mg of LDN, then you either have to take ten times as much of your homemade solution or only use 50 ml of water with the next pill. 50 mg / 50 ml of water gets a solution with 1 mg/ml LDN.
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Yes, I take 45ml, not 4.5ml. I put a 50mg tablet in a bottle of water, then I take 11 doses from that bottle. So I end up splitting one pill 11 ways. 50÷11=4.54.

I have a hard time believing that taking this drug as a pill would make any difference; I did experience the alteration in sleep/dreams, suggesting it was doing what it does to others in that regard. I have found a guy willing to prescribe LDN, so I could get it compounded, and try it, but I'm not holding my breath for it to make any difference.
 
Greetings,

I suffer from osteoarthritis and have heard that LDN (low dose naltroxene) has helped some who have it.

Does anyone have a list of doctors in the Chicago suburban area, preferably south areas, who will prescribe?

Thanks!
 
Can't speak for anyone else, but things are pretty steady state for me over here. Aside from the occasional bad day here and there, I pretty much feel like myself and would say that I'm in remission. Doctor seems to think so as well (which reminds me, I still have to do bloodwork from my last appointment!).
 
Anyone on LDN at a lower than standard 4.5mg? I'm on 1mg which isn't therapeutic yet but working my way.

I may stop at 3mg depending on how things go, I hear that sometimes people do better a little lower.
 
I'm personally not -- I've heard of people "working their way up," but I started at 4.5mg and have stayed there ever since. Not sure if that also has to do with my body size (I'm a 6'2" male, over 200 lbs). I'm not sure about the hows and why's of the 4.5mg designation, nor do I know if a lower dosage would work better for certain people. Either way, keep us posted on how you do, and keep in mind that no matter what dosage you end up at, it's slow-acting regardless! If LDN works for you, it's typically a gradual process.
 
I want to thank everyone for bringing the LDN information to this website. I'm only on my 5th day of LDN but it has helped me from day 1. I've had chronic constipation for 7 years straight and hard painful intestines. I started at 1.5 mg (I'm now at 3.0 mg) and from the very first day after my first LDN dose I've passed stools in the morning 5 days straight without a problem. I dont know if LDN would work that fast but I dont believe it's placebo.

Only downside for me is that about 20 hours after my LDN dose I get slight migraine.

Regarding the 4.5 mg dosage information, I think this is because of the published studies where they used 0.1 mg LDN x kgs with a maximum dosage of 4.5 mg.

Link: Search "24558033" at PubMed.
 
After a successful course of Xifaxan I am asking if my GI will prescribe LDN. I am praying he will prescribe it as I know it is still an off label drug for IBD.
 
What is the LDN prescribed for? I am on Methadone for pain and for pain med addiction but just wondered what the naltrexone does for Crohn's never heard of it before. I've had Crohn's for 18 years now.
 
LDN is an alternative treatment for Crohn's disease. It is an off label use for this medication. It is very safe and has a lot less side effects then a ,or of other Crohn's drugs. It seems to work for about 60 to 70% of people that have tried it. For my daughter it was the only medicine that gave her two years of remission.
 
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Wow that sounds great! I am not willing to taper off of my methadone to be able to try it though. Gotten too much benefits from it.
 
One can not be on any opiate or narcotic when starting LDN. So this drug may not be for you. I just got my prescription today!!!

I am finishing a second course of Xifaxin and will be starting the LDN next week. I am hoping this settles everything down! I've read promising reviews and am so grateful my GI doctor is going to give it a try.
 
Hi everyone,

I just started LDN about a week ago. I am also on Entyvio. My GI didn't prescribe the LDN so I found a doctor who did. Based on some prior posts, I wasn't sure if I was being smart by using both. Would anyone be concerned about using LDN in combination with biologics?

Thanks!
 
kimmidwife said:
Sk12383,
My daughter is also on entyvio and LDN. Her doctor says it is fine.
Click to expand...

Thanks! Another thing I forgot to ask is: what about LDN and Entocort (budesonide)?

One LDN forum I explored outside of this site had mentioned that since LDN is an immunostimulant and steroids are immunosuppresents, they would essentially cancel each other out and negate benefits from both.

Could there be validity to this?
 
I'm weighing LDN with biologicals/steroids decision too. I just started Entyvio injections and want to try LDN before the surgery recommendation that's next if the Entyvio doesn't work. I'm not sure what to conclude. Because functional medical practitioners seem best informed on the value of LDN, I would be reassured if they OK'd steroids and/or Entyvio with LDN. On the hand, many of us are on steroids while taking Entyvio to keep us stable during the longer wait for results. That raises the issue: do I feel better because of Entyvio or long-term anti-inflammatory drugs? I guess you don't know until you're off prednisone for some time. And the process of tapering can make you feel fatigued too. Knowing what's helping is complicated. I may do Entyvio and then LDN. Not sure.
 
BlueSky said:
I'm weighing LDN with biologicals/steroids decision too. I just started Entyvio injections and want to try LDN before the surgery recommendation that's next if the Entyvio doesn't work. I'm not sure what to conclude. Because functional medical practitioners seem best informed on the value of LDN, I would be reassured if they OK'd steroids and/or Entyvio with LDN. On the hand, many of us are on steroids while taking Entyvio to keep us stable during the longer wait for results. That raises the issue: do I feel better because of Entyvio or long-term anti-inflammatory drugs? I guess you don't know until you're off prednisone for some time. And the process of tapering can make you feel fatigued too. Knowing what's helping is complicated. I may do Entyvio and then LDN. Not sure.
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Just my opinion but I would be hesitant trying too many new drugs at one time. I guess if the biological is definitely not working then adding LDN would be the next logical step. I am finally getting back towards a normal way of life and right away my GI is talking about changing some of my meds. First I'm not at my therapeutic dose of LDN yet. Second I want to feel great for a while before stopping other drugs like Pentasa. I've been on such a roller coaster finding what will work that I don't want to interject anymore change for a while. This is the approach I would recommend. Don't jump into too many meds but go slowly.
 
BlueSky said:
I'm weighing LDN with biologicals/steroids decision too. I just started Entyvio injections and want to try LDN before the surgery recommendation that's next if the Entyvio doesn't work. I'm not sure what to conclude. Because functional medical practitioners seem best informed on the value of LDN, I would be reassured if they OK'd steroids and/or Entyvio with LDN. On the hand, many of us are on steroids while taking Entyvio to keep us stable during the longer wait for results. That raises the issue: do I feel better because of Entyvio or long-term anti-inflammatory drugs? I guess you don't know until you're off prednisone for some time. And the process of tapering can make you feel fatigued too. Knowing what's helping is complicated. I may do Entyvio and then LDN. Not sure.
Click to expand...

I was on Entocort prior to starting entyvio and it wasn't enough by itself so i know that Entyvio was the true game changer for me. It seemed like I was starting to lose response to it that's why I was eager to add LDN into the mix, but after some super strict dietary changes, I think I'm stabilizing on entyvio (4 week doses). So maybe LDN can wait. My general intent is to throw the kitchen sink at the crohn's so if these meds can be combined with any expectation of positive result, i'll do it.

Curious as to how it goes for you and others' thoughts on this issue.
 
Has anyone tried LDN in combo with antiMAP or AMAT therapy? It seems like it would work since AMAT would kill organisms while the LND moderates immune response. Kind of a yin/yang combo therapy. I'm on AMAT now and will be adding LDN next week. Hoping I don't get "vivid nightmares".
 
so want to start my 16 year old on LDN. Just looking into it.
Does LDN work for all types of IBD?
or should I say, has it been successful with any Crohns/UC Proctitis sufferers?
 
Hope345 said:
so want to start my 16 year old on LDN. Just looking into it.
Does LDN work for all types of IBD?
or should I say, has it been successful with any Crohns/UC Proctitis sufferers?
Click to expand...
From what I've read people are using it for a lot of autoimmune diseases. Start with a low dose like 1.0 mg or 1.5 mg and increase the dose very slow to get the best results and least side effects.
 
João said:
Hello you all!

Can I take Budesonide with LDN?
Any counter indication?
Click to expand...

It's suggested that you take no more than 10 mg prednisone along with LDN. Since Budesinide comes in 3 mg capsule I would think up to 9 mg would be fine.
 
My son took budesonide 6 to 9 mg a day with LDN and didn't have any obvious side effects. We did wonder if the budesonide was decreasing the efficacy of the LDN but there was no way to know.
 
Just wanted to give an update on AMAT therapy in conjunction with LDN. So far, so good. I'm up to 4.5 mg of LDN each night and no vivid nightmares! I'm currently on clarithromycin and ridampin. I had to drop the levofloxicin due to side effects. I switched brands of LDN and got a three day migraine. Not sure if it was from the brand switch, but I know the new brand compounds from crushed pills vs. the straight powder since insurance will pay for the pills. It's much cheaper so I want it to work, but the switch strangely coincided with the migraine. Anyone else get migraines from LDN? Otherwise, no side effects from combining AMAT and LDN.
 
LodgeLady said:
It's suggested that you take no more than 10 mg prednisone along with LDN. Since Budesinide comes in 3 mg capsule I would think up to 9 mg would be fine.
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Hey, LodgeLady, considering my Calprotectin is 1.800 now, I don't know if I should take steroids before start LDN, or take both. I've read steroids can minimize LDN's effect.

Cruel doubt. :sign0085:
 
xmdmom said:
My son took budesonide 6 to 9 mg a day with LDN and didn't have any obvious side effects. We did wonder if the budesonide was decreasing the efficacy of the LDN but there was no way to know.
Click to expand...

How your son is doing?

Wish good luck! Keep us posted.
 
I've taken short-term budesonide alongside LDN and I haven't experienced any ill effects or loss of efficacy. Like others here have said, I know that a large dose of prednisone is no good with LDN, but if you're on pred and you wean down a low dose (10mg or less, I think), it shouldn't interfere. Because budesonide is a more local-acting/less systemic corticosteroid, and because the dosage is comparatively low, I think you'll be OK taking both at the same time. Tagging jmrogers4 -- I can't remember if her son took budesonide while he was taking LDN.
 
Sorry if this has been answered before but can you take LDN while on Azathioprine? Or do they conflict each other.
 
João , my son has stopped LDN and budesonide and switched to Remicade because he had
persistent inflammation and a stricture that seemed to be worsening.
 
João said:
Hey, LodgeLady, considering my Calprotectin is 1.800 now, I don't know if I should take steroids before start LDN, or take both. I've read steroids can minimize LDN's effect.

Cruel doubt. :sign0085:
Click to expand...

Personally I would take the prednisone first then once you stabilize and wean down to 10 mg I would start the LDN.
 
Can I Join the group please? I have Crohns and am on my second dose of Remicade next week but was prescribed LDN 1.5 to build to 4.5 by my Nuerologist for a PPMS which seems very quiet now. With the onset (last month ) of the Crohns I stopped the LEN after three days but now have permission to back on it after I stop the Prednisone tomorrow which was ineffective for three weeks when I started and doc has pulled me off it after emotional explosions...advice, reactions would be nice...great forum to read btw.
 
Hi Dramadoc - well met! I really don't know much about PPMS since I have Crohn's, but you may be aware of the theory that MS and Crohn's (and all autoimmune diseases) start with the same mycobacteria that affects different systems in the body. This of course is far from proven, but there are some studies testing it now. You may be interested in the RedHill trial testing a triple cocktail of antibiotics for both Crohn's and MS:
http://www.redhillbio.com/RHB-104

LDN is an immune modulating drug, so it makes sense that it would work in both cases since both are disfunctions of the immune system. I'm on both AMAT (similar to the RedHill 104 pill) and LDN. AMAT has worked so well that it's hard to say if LDN is doing anything, but I'm not sick so I'm happy! Figured I'd throw everything I could at my case since it was resistant to other treatments. Plus, my doc said it would take 3-6 months to know if the LDN is doing anything, and it's only been about 2. I didn't have many side effects. Some vivid dreams and one bad migraine that may or may notnhave been related to a supplier switch. I also feel really groggy when I wake up in the morning or in the middle of the night, which is new for me.

Hope you find some relief. I feel for you having both MS and Crohn's. I can only imagine how hard that would be to deal with. This forum is a great support network and has lots of knowledgeable, encouraging people to help you. Wishing for peace and health for you. :)
 
Fourth try of 1.5 is a disaster. Bloody diarrhea two hours after LDN. I've never heard of this....for next two hours. Unless I get more info I'm off LDN.
 
Oh my goodness! I've never heard of that either. That was not at all my experience. How scary. I wonder what the mechanism would be for LDN affecting your GI tract that quickly! I didn't think it did much in the GI way, but modulated the immune system. I would call your doc and certainly may reconsider LDN if it's giving you such bad side effects. I hope you find some relief!
 
Spoke with all my docs and the pharmacy and the upshot is I'm going to try the topical LDN cream. Everyone was baffled about the reaction. So the result is stay the course with my Crohns meds and the Remicade infusion on Tuesday and maybe try the LDN cream next week...scary stuff but at least I know what's the catalyst for the bloody diarrhea...oh well, nothing is easy...
 
Nuerologist wants to see me but can't until Sept 11...won't do anything about the LDN until then...I can live without it but will go on the Remicade as before to control the Crohns...I want the subcutaneous or the topical but we'll see. Just know I will never take another one of these pills with the dextrose filler...
 
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Jmrogers4 said:
Support group for those who are already on LDN or wanting to try LDN
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My 13 year old was prescribed LDN by our Integrative Practitioner but was in a bad enough flair that they agreed she needed to start on Prednisone to get her out of the flair quickly. She was down to 64 lbs and was was just diagnosed with Crohns. Her regular GI Dr has her on a 3 month wean of Pred. and she also started 6MP. We are almost 1/2 way through the wean and are scheduled to see the GI Dr. And the Integrative Practitioner in another week and a half. By then my daughter will be down to 25 mg of Pred. Would it be possible to start LDN while still on Pred? I'm so hopeful that the GI Dr will be on board. We live in Atlanta and our Dr is part of the IBD Clinic with Emory/Children's Health Care of Atl. It is supposed to be the best IBD Clinic in the country. All that being said, I'm not yet sure how she will respond to LDN. Should I bring her the Pennsylvania studies to read? I'm so ready for her to start LDN! It's sitting in our refrigerator, waiting.... :)
 
Angelart73 said:
My 13 year old was prescribed LDN by our Integrative Practitioner but was in a bad enough flair that they agreed she needed to start on Prednisone to get her out of the flair quickly. She was down to 64 lbs and was was just diagnosed with Crohns. Her regular GI Dr has her on a 3 month wean of Pred. and she also started 6MP. We are almost 1/2 way through the wean and are scheduled to see the GI Dr. And the Integrative Practitioner in another week and a half. By then my daughter will be down to 25 mg of Pred. Would it be possible to start LDN while still on Pred? I'm so hopeful that the GI Dr will be on board. We live in Atlanta and our Dr is part of the IBD Clinic with Emory/Children's Health Care of Atl. It is supposed to be the best IBD Clinic in the country. All that being said, I'm not yet sure how she will respond to LDN. Should I bring her the Pennsylvania studies to read? I'm so ready for her to start LDN! It's sitting in our refrigerator, waiting.... :)
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I just stopped LDN. At first I saw positive results but it kept wearing off despite increasing the dose. Don't look for LDN to be that miracle drug. It will not be the total answer but at best an adjunct to other medicines.
 
I'm sorry your daughter is sick. That's about the age I got sick, and it was so hard. Luckily, you have the benefit of modern medicine, instead of 1980's medicine! Crohn's treatment has come a long way. I am also on LDN as a compliment to AMAT therapy. I started the AMAT first and was in full remission in 6 weeks. I'm hoping the LDN will modulate my immune system while the AMAT kills the bacteria. It's ahrd to know if it's working since AMAT worked so well, but in theory it should. I don't have side effects, so have continued with it. From what I understand, it's a creeping healing vs. that miracle drug. Check out this group of docs, since I believe they have a novel approach that has worked for many:

TheCrohnsInfection.org

There will be a core research pack on the site soon that you can print and bring to your doc. I'd suggesting printing and bringing any research you can, since I find they don't have time to read it all and I've had to educate them. That's a nice area - I lived about a mile from Emory while I went to school. Really hope your daughter finds some relief soon! It's a hard road to walk. You are her best advocate!
 
What exactly is this AMAT therapy, my friend?

I'll do an anual colonoscopy soon. After that, I'll discuss with my GI about treatments. I'm not taking any meds for almost 2 years. No pain or blood. Only 4 BM per day. But the fact is that my calpro is 1.800 now.

I already have a prescription of LDN :thumright:, but I think is better start with Entocort and than try LDN and other alternatives treatments.

Now I'm just taking Probiotics, Calendula Tea, Curcumin and Vitamin D!
 
Hello Joao - AMAT stands for Anti-MAP Antibiotic Therapy. It's a combo of antibiotics aimed at killing the mycobacteria responsible for Crohn's disease in some genetically susceptible patients. My doc prescribed clarithromycin, rifampin and levofloxacin. I got my blood tested for MAP in New Zealand and was positive. I have felt well since I started this treatment, once my body adjusted to the meds.

Glad you are feeling relatively well. I take most of those supplements too, and I think they really help. Best of luck to you!
 
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Angelart73 said:
My 13 year old was prescribed LDN by our Integrative Practitioner but was in a bad enough flair that they agreed she needed to start on Prednisone to get her out of the flair quickly. She was down to 64 lbs and was was just diagnosed with Crohns. Her regular GI Dr has her on a 3 month wean of Pred. and she also started 6MP. We are almost 1/2 way through the wean and are scheduled to see the GI Dr. And the Integrative Practitioner in another week and a half. By then my daughter will be down to 25 mg of Pred. Would it be possible to start LDN while still on Pred? I'm so hopeful that the GI Dr will be on board. We live in Atlanta and our Dr is part of the IBD Clinic with Emory/Children's Health Care of Atl. It is supposed to be the best IBD Clinic in the country. All that being said, I'm not yet sure how she will respond to LDN. Should I bring her the Pennsylvania studies to read? I'm so ready for her to start LDN! It's sitting in our refrigerator, waiting.... :)
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Shouldn't be an issue starting LDN with the prednisone. What we were told by the GI was the 10mg recommendation was for the trails that pred at that amount would not skew the results of the LDN and since LDN ca take a long time to work if it's going to, it would give it time to work.
 
Hi Kimmidwife - to which therapy are you referring? The AMAT is working really well even though I had to drop the levo. TheCrohnsInfection.org has a bunch of other AMAT patient stories. So far so good combining the LDN with it. I still have no Crohn's symptoms at 8 months out. The LDN may be causing a little bit of insomnia, but it's hard to know if it's that or the kids! Thanks for the interest. I'm happy to field any questions about my experience if it helps people make better, more informed decisions about their treatment.
 
Hi All
Finally started LDN 3 wks ago, Had hopefully my last infusion last week,,feeling a bit rough in the belly region and some D but fingers crossed

Any and all advice welcome, will try to keep you guys updated with hopefully some good news

All the best
Cleg
 
Corpcleg - I hope it helps! I combined it with AMAT and the jury is still out on whether it's doing anything, and I may never know which treatment is keeping me in remission, but just glad to be there. I'm in the US, but have always wanted to come to Ireland and look around. Envious that you are there, but I'm probably romanticizing it. :) Best of luck to you!
 
Does anyone have any success stories of teenage boys getting remission from going on LDN? Or the effects it may have on a growing boy? (My son is 14 - diagnosed almost 2 years ago)

We are in the process of choosing another therapy for my son (Lialda didn't do the trick) and I would like to stay away from the chemotherapies if at all possible.

He has inflammation from the rectum up the left side of the large intestines (too far up for a suppository they say) also a little inflammation around the terminal illium and now the appendix.

Any advise is appreciated! I am new to all of this and just want my son back!
 
BoyMom - I'm so sorry your son has Crohn's. I recall how hard it was for my parents when I got Crohn's as a teen and they just wanted me to be well again. It took two decades and trying all of the other therapies, but I finally had success with AntiMAP therapy. When I was at the Chicago MAP symposium this summer, I met a handful of parents with teen patients on AntiMAP that had been quite successful. One teen boy proudly told me that he had grown three inches that year! I know that is a huge consideration for boys and Crohn's can stunt growth. I'm on LDN as well as AntiMAP, and I've found them to be a great combo once I got used to the LDN, which took a couple of months.

If you want to read a story about a dad who had success with both of his kids on AMAT, check out the patient stories at TheCrohnsInfection.org. If you are seriously interested, I may be able to connect you with a mom of another teen boy who could talk to you about AntiMAP as well. It certainly an option to consider. I hope you find some relief for your son - and you as well. The emotional toll of this disease is just as great as the physical toll. Sending hugs and good thoughts your way!
 
Hi BoyMom -- paging Jmrogers4. Her son Jack was on LDN around that age and did well if I remember correctly, although he is no longer taking it last I heard.
 
Thanks for the page Jesse. I believe I posted in another thread to you Boymom in the parents section.
Yes, my son was on LDN for about 18 months. He did get to remission on it. Unfortunately, it just wasn't enough to keep him there and it took a long time for it to work. We just didn't have time to wait and see if it would get him back to remission after a flare. We tried EEN and then Prednisone to try and get him back to remission and hoping the LDN would again take over but he was 14 at that time and hadn't hit puberty and we just couldn't wait another year to see if it was going to work.
He is now on remicade and doing better than ever.
I'm glad we tried it and we're thinking it may be possible to go back to it some day but I think we will wait until he is done growing and developing.
 
I'm interested in learning about LDN for my husband who has Complex Regional Pain Syndrome (CRPS/RSD). I saw that some people with CRPS responded well to LDN http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ and since no treatments have worked for my husband yet I started looking up LDN and I had thought that it might be expensive but after a quick google search it seems to be fairly cheap. I'm not sure how to go about getting my husband on it though and the dosing sounds worrisome (He's about 280 pounds). I need someone to hold my hand and walk me through this please. :worthy:
 
My integrative health MD prescribed it for Crohn's, so can't comment on CRPS. As to getting it, there's a list of reliable pharmacies here:

http://www.lowdosenaltrexone.org/index.htm#How_can_I_obtain_LDN

I've used McGuff and The Pharmacy Shoppe in NY and found both to be good. I hD headaches when I switched from one to the other for a few days, but it worked itself out. My doc started me at 1.5mg for two weeks, then 3mg for two weeks then up to the full dose of 4.5mg. The taper up helps the side effects. I had a couple of very vivid dreams when I increased the dose, but no nightmares like some. I also woke up a bit for the first couple of months, but with kids that was a normal occurrence anyway, so I dealt with it. My doc told me it would take 3-6 months to see if it was working, and I feel like it is now that I've been on for about 7 months. Hard to tell what is AMAT and what is LDN, but I'm better so I'm not messing with anything!

As to cost, the NY pharmacy covers it under my insurance so 90 days is only $15, but McGuff was more expensive as it was out of state. Still only a couple hundred for 90 days. Not too bad. Best to your husband. I hope it helps!
 
My son is on Entyvio and his bleeding has stopped, but cramping is out of control and he now has shoulder pain. I'm curious about LDN. But combining drugs always scares me because I know the risk of cancer as a side effect increases when you add imuran to a biologic. Does anyone know if the same risks apply when adding LDN to a biologic? From what I've read, LDN seems safe, but it's the combination I'm worried about.
 
Hello,

I've just joined this fascinating forum.

I have CD since 1999, currently on 50mg Azathioprine & 100mg Allopurinol co-therapy.

I have now decided to take LDN after a number of recent flares. Just waiting on the delivery. Does the sleep disturbance begin straightaway?

Also I am on Valium 6mg daily for social anxiety, will this affect LDN?

Thanks in advance!
 
Hi Will! Your mileage may vary, but the sleep disturbances for me were fairly mild. More like vivid dreams, really. I also can't speak to how it will or will not affect Valium, but I take fluoxetine (more commonly knows as Prozac, which is an SSRI), and it doesn't affect things in the least little bit. I think that LDN is pretty safe to take with a lot of drugs, but off the top of my head, you should not be on over 10mg of prednisone, and you probably shouldn't be dependent on any sort of opioid medication (as naltrexone is an opioid inhibitor).

Hopefully this helps somewhat -- I would ask a medical professional about the valium, however.

LDN has been very helpful for me, personally, but keep in mind that the improvement was verrrrrrrrrrry gradual, so I didn't see any changes overnight. Keep us posted on how you do, and I wish you the best of luck!!
 
I also had a couple of vivid dreams that started right away, but they were kind of cool and not nightmares. It only happened when I'd increase the dose as directed to get to the full dose of 4.5mg. I think it's helped me as a complimentary therapy to AMAT.
 
@JDTM thank you for your kind words.

I am not taking any Preds, they are the work of the devil! I have had very bad experiences with Preds.

My delivery is due this morning and I am going to begin straightaway, however I have one question regarding dosage, do I begin low i.e 1-1.5mg or jump straight in at 4.5mg at night?

Thanks in advance.
 
I went straight in with 4.5mg. Some folks work their way up, but I just went ahead with the pills that came in the mail. :)
 
I have been on LDN for a couple of years. It is the closest I have ever come to
Being in remission. However although I am still taking it it doesn't seem to be working anymore. I decided to try getting it from Skips pharmacy as I am wondering about where I have been getting it made and how fresh it is. My biggest question is that I don't have any active inflammation at this time however I still have some symptoms and wonder what all your thoughts are on if it would still be helpful to me?
 

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