LDN startup questions

[megawatt]

It's well documented that a lot of people with Crohn's who go on LDN have some increase in their symptoms before it starts to kick in and then improve. I was just wondering for those who have experienced this to what degree your symptoms got worse. Was it full scale flare stufff or just a minor excacerbation of symptoms - how bad did it actually get?

Or whether looking back it wasn't a typical flare type of episode - i.e some of your typical flare type symtoms but not others.

Also, how long did it last, a few days , a few weeks?

Just trying to gauge where my wife's at as she's recently started LDN and think she's in the middle of this initial "storm".

 

[Kev]

I kept a daily diary (refer to it, because neither of us should trust my memory). I'm not sure if ANYONE can use my experiences as a benchmark. My disease is VERY atypical. It spread so fast that it confounded the head of GI training here (we're talking a 30 year plus career). And, if that isn't bad enough, I was going thru pred withdrawal at the time. I've heard from others that their experiences weren't so bad. This disease is so 'particular'.. everyones is different... different severity, different extent, different areas of involvement of the tract. My extremely basic/limited understanding of how it works is that the LDN creates a 'rebound' effect; and allows the body to start fighting the disease and begin mucosal healing. But, how long that takes in any given individual is a combination of how strong their immune response is; and the immune response is based on how damaged the GI tract is. Sort of sounds like Hellers Catch 22, doesn't it? In my case, I was always used to dramatic, downhill flares... often with no end in sight. And, if the downhill spiral slowed/stopped, then any upward progress was slow and minimal.
But, on LDN, when things started to turn around for the better, I noticed that every day was better than the day before, and that progress compounded. For a while, I waited for the other shoe to drop... for one of those out of the blue super downhill spiral flares to crop up... but they never did. I started off (at the first few good signs) suspecting I was getting better; but as I kept getting better and better, that suspicion turned into true conviction. I think anyone who has been on the rollercoaster ride Crohns is will get that. It takes time to ... develop... establish.. faith; or belief, that the end is in sight.

 

[xmdmom]

Megawatt,
Where did you read/hear this:
"It's well documented that a lot of people with Crohn's who go on LDN have some increase in their symptoms before it starts to kick in and then improve." ?

 

[LizMc]

Hi Kev, I was wondering if I could pick your brains - or anyone else's for that matter on LDN, worsening symptoms and combining it with steroids

My daughter, who is 20, started LDN just over two weeks ago - she has just gone up to 2ml after taking 1ml liquid for 14 days. She also started taking 9mg Budesonide two weeks ago, due to taper off at 4mg and then 2mg within the next six weeks.

Her symptoms have definitely got a bit worse, which is unusual as before when she has been on Budesonide only, she has got a good bit better. I realise everyone is different but I am wondering if this is a result of combining the two (the LDN reacting against the suppression of the immune system by the steroids) or just a result of "getting worse before getting better?" She is keen to stick with the LDN but worried that her symptoms will just get worse and worse.

 

[Mark. M]

Hi Kev, I was wondering if I could pick your brains - or anyone else's for that matter on LDN, worsening symptoms and combining it with steroids

My daughter, who is 20, started LDN just over two weeks ago - she has just gone up to 2ml after taking 1ml liquid for 14 days. She also started taking 9mg Budesonide two weeks ago, due to taper off at 4mg and then 2mg within the next six weeks.

Her symptoms have definitely got a bit worse, which is unusual as before when she has been on Budesonide only, she has got a good bit better. I realise everyone is different but I am wondering if this is a result of combining the two (the LDN reacting against the suppression of the immune system by the steroids) or just a result of "getting worse before getting better?" She is keen to stick with the LDN but worried that her symptoms will just get worse and worse.

The feeling I got when I began LDN was very similar to withdrawing from morphine. It's almost like your body is withdrawing from natural endorphins, which control your bowels much like opiates would. I went straight to 4.5mg, and I felt spun out and rubbish for a fair few weeks, and didn't get any better for a good 2 months+ or so. I stuck with it because everyone on here had said that it wasn't an over night thing, but I was extremely skeptical and thought it would never work. But now it's smooth sailing.

It is well worth sticking with it. It gets worse and worse and worse, then very gradually better, and all of a sudden before you know it you're 'normal' again. I feel like a lot of us crohn's patients are so totally out of touch with what it feels like to have normal bowel function, non-achy joins, not needing to sleep 10-14 hours a night and feeling energised for most of the time we're awake, most of us forget what it was like when we were younger and didn't have all these problems (if indeed we were lucky enough to develop symptoms later in our teens).

I would probably add that I get the occasional set back with LDN. If I get the flu, it's straight into a mini 3-5 day flare for some reason.

 

[Kev]

Well, when it comes to picking my brains... as us old folks say... pickens are mighty slim.
Couple of thoughts... I'm not familiar with liquid LDN at all. 4.5 mg pills are the only thing I've ever used. That was the dosage in Dr Jill Smith original study. I know she finished a pediatric trial... I don't know when that will be released. Thing of it is... unless you've got some hard data from somewhere suggesting the 'correct' doses for liquid LDN treatment, I'd be dubious about relying on the LDN. (as it is) Others, with experience in liquid doses, may be able to offer some advice.

I've heard that LDN can be used with 10mg or less of pred... I've no sources to confirm that... it was posted on here someplace. I'm not medically trained or qualified to offer advice... and you'll need to confirm the 10 mg or less of pred and whether that relates on an equal level to Budesonide. But, if I were prioritizing, I'd 1st look into dose info for liquid LDN.