Ldn info please!

[Zootini]

Hey im just looking what would be a good med for me to mention to my doc next time I have an appointment, at the minute ldn is looking quite positive! Just wondering if anyone could tell me generally anything about it, has it worked for you? Did you experience any side effects? Is it worth it? Are there any major side effects I need to consider?

Basically I have been on pred now for the last 2 year's, and crohns still not under control, feel at a bit of a loss, have given aza a go but had to stop due to an allergic reaction. Do you think this drug could be something that could work for me?

Id appreciate any advice/info! thank you xx

 

[JDTM]

Hey there Zootini!

LDN seems to work well for many, although it takes time for it to have an effect. There are a couple of things to keep in mind:

1. Here in the U.S., LDN is not considered "standard of care" by many gastroenterologists; they can prescribe it off-patent, but many are reluctant to do so. Finding a gastro doc who is supportive of LDN may prove to be a challenge. Check out the sticky at the top of this forum if you want to print out some studies -- it might help to sway your doctor's opinion.

2. If you're prone to side-effects, you can mention that the side-effect profile for LDN is VERY low. Personally, I had some kinda vivid dreams at first (you take the medication at night before bed), but even those have settled down. The published studies indicate low side-effects, and from what I've read, most people who have tried it on here have only experienced the crazy dream side-effect, if anything.

3. Not sure how to go about acquiring LDN in the UK -- I'll wait for someone from across the pond to chime in about that! It's not something that's readily available at most pharmacies here -- Naltrexone comes in a standard 50mg dosage (I think), so LDN needs to be custom compounded to 4.5mg.

I'm not quite a month into my LDN, but so far, so good. I started when I was in a good place though, just to clarify. In any case, hopefully this answers some of your questions! Keep us posted on your progress!

 

[Jmrogers4]

What dosage of pred are you on? Recommended dosage for LDN is 10mg.

My 13 year old son has been on it for 6 months and it has worked wonders. No side effects for him, said he couldn't remember any dreams so they must not have been too vivid. One headache the 2nd day of LDN but none since.

There is a percentage that LDN does not work for and it does take a while to kick in like 8-12 weeks.

 

[Zootini]

Thank you both for your replies! Will be taking the info on LDN to the hosp with me!

And I'm currently only on 6mg after tapering but can't seem to get any lower and symptoms are still there!!

 

[David]

What dosage of pred are you on? Recommended dosage for LDN is 10mg.

Are you sure about that recommended dosage? What dose is Jack on?

I usually see 4.5mg of LDN being the more standard dose.

 

[JDTM]

Reading that back, perhaps the 10mg is referring to Prednisone (while on LDN)?

 

[Jmrogers4]

Sorry typing on little phone, yes 10mg of pred with 4.5mg of LDN - Jack is on 4.5mg of LDN

 

[Jmrogers4]

Zootoni,
Are you currently taking any other meds besides the pred? I know there are some you can take while starting LDN which gives a chance for the LDN to kick in, we pretty much did an EN diet for the first few weeks which seemed to help as we stopped all other meds when he started the LDN.
Something to think about some people experience worsening symptoms before feeling better with LDN

 

[David]

Oh, sorry about that. I misunderstood and thought you meant 10mg of LDN. My apologies.

 

[Zootini]

I'm also on sulfasalazine and tried aza but had an allergic reaction so had to stop them sadly. I'm also on codeine phosphate just to stop BMs so I can get out during the day comfortably!

Yeah to be honest I don't mind a few months wait til they start working, just so I know something will improve is all that matters to me now. Symptoms have still not settled after 2 yrs of pred and don't want to carry on, don't see the point in taking them just for the sake of it, they're not improving anything!

 

[Kev]

OK, I've heard that you can take up to 10 mg of pred with LDN.... but I'd advise anyone who goes this approach not to taper off the pred UNTIL the LDN shows it is working. Why? Pred withdrawal can cause such upheaval that the symptoms of the withdrawal may be mistaken for side effects of the LDN. I went thru a very rough go when I started LDN that may have been solely caused by pred withdrawal. In hindsight, it would have been wiser to follow my own advice, but I just didn't think of it at the time. I hope you have success finding a doctor to prescribe it in the UK. A lot of folks from the UK have tried and failed to source LDN. Be sure to keep us posted.

 

[Zootini]

Ok thank you, will have a chat and see what they suggest have tried to taper but just have stopped at 6mg at the min. Oh, i hope I can get it!!! Would much rather try that then humira etc! Thank you

 

[mnsun]

The codeine should not be taken within ?3-6 hours? of LDN--being an opiate antagonist. Some doctors might say not to combine the two at all, but I'm not sure how low a dose of codeine you're on or if you take it more than once a day.

Therefore, LDN would block the effects of codeine temporarily or, if your body has built up a slight dependence on it, MAYBE it could cause withdrawl effects (nausea/vomiting etc.). Doctors with more experience prescribing LDN may have differing opinions on the situation versus those without.

 

[Jmrogers4]

I believe the LDN stays in your system for about 4 hours but not sure how it would react with codeine after that - a good question for the dr. I think most of those that take LDN do so a night. I know that is when we were told to have Jack take his.

 

[David]

I believe the LDN stays in your system for about 4 hours but not sure how it would react with codeine after that - a good question for the dr. I think most of those that take LDN do so a night. I know that is when we were told to have Jack take his.

The half life of naltrexone is 4 hours and this paper explains biological half life.

 

[Jmrogers4]

Thanks David, that was very interesting, I don't think I've ever read that one. Of course that brings up another question for me if as it says 96% is absorbed through gastrointestinal tract would that be true as well for a "compromised" intestetinal tract that is not fully absorbing nutrients as it is and once it has hopefully done its magic and you have achieved some mucosal healing are you absorbing more then you were before.
I guess since we are not worried about him out partying every weekend, we have not looked into its reaction with alcohol or other drugs besides things he would normally take like tylenol or triamenic

 

[Zootini]

I take one 30mg tablet in the morning with my pred

 

[David]

Good question Jm, I don't know.