Starting LDN

[badbelly]

I'm starting LDN tonight and thought I'd make a thread to detail my experiences with it for those interested in starting it themselves and reading about how it goes for others.

After visiting a more progressive GI I was able to get a Rx for LDN to try out for a few months. My primary GI is good, but she doesn't believe in LDN and keeps pushing Humira on me (my second GI wanted me on Humira too but gave in to my LDN request lol). Just not ready to bring out the big guns on my Crohn's, especially since I'm having very few symptoms right now.

Just to give some context to those reading, I'd consider my Crohn's mild to moderate and have a history of bowel obstructions, an abscess and bad infections. Had lots of pain this year. Since being diagnosed in January I went on a course of prednisone a couple months ago which I suffered with pain all the way through and after. Slowly I have been getting better and better though and for the past 3 weeks I have been pretty much normal. Just fatigued and a bit of pain now and then.

I'm on Pentasa which I know is helping me based on missed doses b/w refills, but It hasn't knocked my Crohn's out completely and I still know it's active which we all know is dangerous to just let linger.

Hoping that LDN will put me completely in remission and let my bowels heal.

I'm a bit worried about side effects and about getting pain again since I can't take pain killers anymore and suffering though belly pain sucks as I'm sure everyone here knows.

Anyhow! Long rambling first post. Will keep the thread updated if there is interest and hoping for the best!

 

[Clash]

Why can't you take pain pills? You can take them with LDN, if it were to get real bad, I think you just have to time them for when the LDN isn't doing its thing. I think that is four hours bit Im going to tag Jmrogers4 and Kev.

 

[JDTM]

Right on badbelly, keep us posted! I'm currently on the LDN/Pentasa combo, and aside from a recent bump in the road, it seems to be working well. The changes were very gradual -- so gradual, in fact, that it sometimes seemed imperceptible -- but overall I think I'm in a better place now that I'm taking LDN. Just ordered a refill the other day!

RE: painkillers -- not sure what other's experiences are here, but I recently messed up a rib and although I'm trying to stay away from painkillers, I caved in a couple times this past week. (Waiting on X-ray results. Fun times.) Not sure what the actual effects are but if I find anything else out I'll let you know. Check out my previous thread ("LDN vs. painkillers") for others' input on this.

 

[JDTM]

Seconding what Clash said. Personally, I don't live on pain pills -- up until now, I've never actually had them on hand since I was first diagnosed. That said, if my stomach started killing me mid day, I'd probably take some if things got dire. If someone were taking painkillers routinely, however, I could see how that could interfere with LDN (or vice versa).

 

[Jmrogers4]

Naltrexone is an opioid antagonist so it binds to your opioid receptors so it would make them less effective obviously you can take tylenol but I'm thinking you are talking much worse pain. That being said most take their LDN in the evening as that is when it is most effective and as Clash said it is generally a 4 hour window that it works in that it shuts off your endorphins for a 4 hour time period and when the body starts producing them it is supposed to produce more to make up for that lost time (that is my general, not a doctor basic way it was explained to me) How that helps Crohn's I don't know but I will tell you it has made a huge difference to my son.

So you could take a pain pill in the morning but as I told Jesse, probably best to check with doctor.

Jesse is also correct, it takes a loooong time to work. We saw improvement at about 3-4 month mark, My son was not really having symptoms, he had normal bowel movements and no more joint pain but it moved at a snails pace from that point until we hit about the 8-9 month mark. Since that point he has had clear scopes, normal blood work and has gained weight and grown (going from 77lbs and 5' to 100lbs and 5'2").

Now we have to remind him that he still has to be mindful that he has Crohn's and can't stay up all night, every night, eat popcorn and sunflower seeds. That is the only time when we have seen a small blip on his health (diarrhea, stomach pains) but he is healthy now and I hope it lasts that way for a long time. LDN has been our miracle drug, there is a small percentage that it does not work for but if it is compounded right, taken at the right time I think it is worth the shot.

Hope you see great results, keep us posted.

 

[Kev]

Hi, I missed the tag, somehow.. glad I spotted this thread. LDN has to be taken at nite (I read a post on here that it works with the sleep cycle.. so bedtime is the BEST time). It's a low dosage, but it might prevent opiate based pain killers from being effective over the time span it takes to be processed... I figure wild assed guess is that if you take it at bedtime, by morning it shouldn't interfere at all with pain meds.. only time/experiment will tell the tale. Like, you could ask a doctor.. but most are in the dark on 4.5 mg doses of it.. and if they look at their Doctor's Pharma Reference, any info there will likely be based on a typical dose of 50 - 150 mg.. you see what I'm saying? There is little in the way of knowledge base for what (if any) interference such a low dose may cause. I believe the interference is a one way street.. I had to take Tylenol 3 with codeine due to an abscessed tooth.. but I could only take it at nightime/weekends because of my work. I didn't notice any issues with the Tylenol 3.. and it didn't affect my IBD either. My final thought.. and I'd like to shout this out to everyone considering LDN. It takes a lot of time to kick in... and you might experience flare-ups or worsening conditions before it does kick in. So, if you are trying it.. give it a good 3 months before deciding whether it is working or not. It is a slow, gradual change.. but once there, it is pretty much rock solid. (if your supply is fresh, consistently compounded, and you don't muck about). The success rate is way up there, so the odds are it will work for you if you give it a try.

 

[badbelly]

Thanks for the responses everyone! And thanks for all the info about taking w/ pain killers. Right now it's not a problem since my pain is infrequent and not too bad when it comes. Just was worried about if the bad pain comes back. My doctor told me when he prescribed it not to take w/ pain killers or I'd get very sick. Kev may be right though, his knowledge of interactions may be based on the high doses. I'll be sure to follow up w/ him if my bad pains come back.

I got a three mo. Rx, so I'm going to try it out for that period and see how I do. Then I'll make the call to continue or not.

 

[momofzach]

Best of luck with the LDN, I have been taking it since last fall, and can honestly say I have never done better. And NO other meds!

 

[badbelly]

Week 1 Update:

Hasn't been the best week. My symptoms are actually worse! More pain, worse BMs and extremely tired. I feel like I sleep OK (aside from a burst of energy or adrenaline shortly after taking), but I'm very tired and in a bit of a fog all day. Doesn't help that I'm off coffee/caffeine. No crazy dreams or anything.

I know people have said it takes a while, so going to keep at it. Wondering now though, after reading ldninfo.org, if I got SR capsules. I didn't know I was supposed to ask that before filling 3 months worth of pills. May head down to the pharmacy and see if they know.

 

[momofzach]

Week 1 Update:

Hasn't been the best week. My symptoms are actually worse! More pain, worse BMs and extremely tired. I feel like I sleep OK (aside from a burst of energy or adrenaline shortly after taking), but I'm very tired and in a bit of a fog all day. Doesn't help that I'm off coffee/caffeine. No crazy dreams or anything.

I know people have said it takes a while, so going to keep at it. Wondering now though, after reading ldninfo.org, if I got SR capsules. I didn't know I was supposed to ask that before filling 3 months worth of pills. May head down to the pharmacy and see if they know.

I had a little trouble in the beginning, but after a few weeks things started improving. Hope it gets better for you!

 

[arrowhead]

I have been on ldn for about 6 weeks now and my Dr. put me on a gluten free diet and a bunch of vitamins,I have not felt this good in years.Are you on any kind of diet?

 

[Jmrogers4]

My son went downhill at first as well. We did SCD/Paleo for a few weeks and then Gluten free for several months. Hope things start improving soon for you

 

[badbelly]

Month 1ish Update

Unfortunately it hasn't been a very good month. The first week as I mentioned, things got a little worse, but I wasn't too worried about it. Weeks 2 and 3 things went back to 'normal' (pre LDN normal), but still wasn't feeling good so to speak. Last last week and a half however, has been very bad. Belly pain has come back strongly. Not as bad as back when I was in full flare on Prednisone, but still bad. Getting pain attacks multiple times a day and I feel like the Pentasa and LDN are doing nothing to help.

I have a GI appt in 2 months, but I think I'm going to need to make an emergency appointment next week if this keeps up. Which really sucks, because I know they are going to tell me the LDN experiment is over and it's time for Humira. I just feel like I haven't given it enough time to "kick in" and make me better. Maybe I can hold out for a couple more weeks. Going to keep a really close eye on things I guess.

 

[badbelly]

I have been on ldn for about 6 weeks now and my Dr. put me on a gluten free diet and a bunch of vitamins,I have not felt this good in years.Are you on any kind of diet?

Yeah I'm on a gluten free diet and have cut down a lot on grease and dairy. Also gave up caffeine and alcohol.

 

[momofzach]

I am on a lot of supplements and vitamins, and I have certain things I never eat (mushrooms, onions , salad, or fresh fruit) but I do not avoid gluten or dairy, or really anything else besides sweets.

 

[Queastor]

I've had a-lot of luck by cutting out carbohydrates so you could try doing that. That's basically what the SCD diet is if you analyze the actual food in it. Lentils and nuts have a higher percentage of fat and protein than any other vegetable source that I know of. which means less calories from carbohydrates. And other than that you eat SCD yogurt which is only fat and protein, or meat which likewise has no carbs. Or vegetables which just don't have many calories from carbohydrates in general.

It's on page 7 or so of the SCD book. I can't remember the exact quote but basically people with crohns tolerate fats and protein better than carbohydrate. Just something some doctor noticed in the 1920's

I literally eat less than 200 calories from glucose a day. I haven't had any today or yesterday (ate 2 pounds of hamburger and about 9 ounces of cheese yesterday, today I've eaten 7 chicken drumsticks and drank about the equivalent of 1/3rd a cup of fat some of which was coconut oil the rest the fat from the chicken.)

I don't think living on protein and fat is particularly healthy in general because it's harder for your body to digest it all and get enough energy but as far as crohns goes it definitely helps me. (My scopes are clear but I still have the disease, pretty much been like this since I started the diet nov 22, 2009)

If nothing else eat more colby jack cheese. That's my go to food.

NOT saying to stop the LDN just trying to give you something you could try as an alternative to the humira.

 

[badbelly]

Curious, did you guys see a nutritionist and or allergist to decide what food to eat and what to cut? It's hard for me to decide what foods to cut since my only symptom is pain and all food/drink causes that.

 

[Kev]

When I first started LDN, I had already seen a nutritionist. She was very familiar with IBD and I was on a high fibre, low fat, low fibre, low residue, lactose free diet, including vitamins and probiotics. After LDN kicked in, slowly, with the passage of time, I started experimenting with my diet... adding this, that, etc., until now I pretty much eat anything I like (gassy foods, problematic foods, these I know will have repercussions, so I watch them else pay the price... increased pain levels from all my internal scar tissue).

 

[Queastor]

I did see a nutritionist once but to be honest I didn't find it to be much help.

If I was cut up inside I might blend my meat in a blender. I've actually done that before with tough meat. Depends how tough the meat was.

Chicken and pork are probably easiest to chew as far as meat goes so they probably wouldn't cut you up inside as badly

SCD yogurt is good as I said before. Yogurt you buy from the store won't work though since it'll be 50% carbs.

I'm not sure how you'd deal with hardened cheeses. I don't think they'd feed the bacteria that cause inflammation but they could still tear you up inside if they were all you ate. Eat colby jack cheese with some sort of meat.

I personally don't feel good If I eat too many eggs but they might work for you. They're soft and don't have many carbohydrates.

I never drink anything but water.

Whatever you eat/drink it'll probably go down better if it's not cold or hot. Tap water might be too cold, etc.

I should say that based on my theory of how LDN works that it actually SHOULD make you sicker before it makes you better. This is how I think it works.
LDN
-increases TNF endorphins -->Kill cancer cells(known),Slow down your rate of healing by hurting cell growth similar to kimotherapy(known), might help kill whatever bacteria causes crohns(personal theory is Mycobacterium Avium Paratuberculosis)
-Increases T-cells, may or may not help crohns but misfiring/mismarking of cells makes your body attack it's own cells increasing inflammation which eventually goes down but probably is at a higher level than in a normal person even after healing. Heightens resistance to opportunistic infection.
-Increases bodies natural methamphetamine your body mostly adjusts by making it's receptors less sensitive. Withdrawal effects if you quit. Might be similar to being on a consistent low dose of Ritalin.

-Some endorphin probably T-cells or one of the TNF endorphins but could be something else helps you go into remission by helping fight whatever bacteria actually causes Crohns.

 

[momofzach]

Curious, did you guys see a nutritionist and or allergist to decide what food to eat and what to cut? It's hard for me to decide what foods to cut since my only symptom is pain and all food/drink causes that.

The only way I knew what to cut out was by noticing that certain things always made me hurt, or nauseated, which can only really be done when you are not flaring. I stick to liquids during a flare. I had some allergy tests done, but am not allergic to anything. Best of luck!

 

[badbelly]

Thanks for all the great replies guys! Helps a lot to hear about diets and what has helped other LDN users.

Unfortunately, I'm flaring bad right now. I saw my doc today and got put back on prednisone (seems like I just got off it!!) and antibiotics. I decided to stop LDN, at least temporarily so I can safely take painkillers. The pain is just way too intense to handle; almost went to the ER last night it was so bad.

After my flare gets calmed down I'll have to make the decision to give LDN another try, with more time to work and try more extreme diets, or to bite the bullet and go on one of the biologics.

This past attempt, I was on LDN for 1 month before the flare started and almost 2 week into the flare before stopping.

 

[Kev]

I don't recall whether I mentioned this or not, but flaring when starting LDN can occur. I did... whether from pred withdrawal, or the disease... free from the pred I was taking to keep it in check... BUT before the LDN had sufficient time to fight off the flare.. I don't know. Anyone considering LDN pretty much can expect to get worse before getting any better. And it can take 3 months... It really has to be considered when going with LDN.