What makes someone a good candidate for LDN?

[Jam300]

I've been trying to figure this out myself for a while but haven't had much luck due to the nature of LDN evidence and the lack of studies on it.

Does someone who knows a bit more about how LDN functions know what would make someone a more or less viable candidate for LDN? Does disease location/severity/type come in to play?

 

[ctrl z]

I don't know the answer to this question and I'm not sure if there is one. I think it is a relatively harmless drug compared to 99% of Crohn's medications so anyone is a good candidate for it.

I started it because I felt that biologics would be like throwing napalm at an ant hill (for me) and I didn't want to go that route. Some people take it after they've failed everything else.

It's so hard a lot of the time to even find someone to prescribe it, that I think any good candidate is the person with enough persistence to get it at all :wink:

 

[Jam300]

I've managed to find a way of getting some (in the uk, this seems relatively simple) so, as long as theres no obvious reason why I might not be a good candidate for LDN, i'll start that as my first ever medication. I've a colonscopy scheduled for January to find out 'where i'm at' and then once I have that I can get the LDN, with or without my GI.

Thank you for your reply ctrl z, it was about as good a reply as any I seem to be able to get on LDN's limited data. Your advocacy of LDN is inspiring!

 

[ctrl z]

Good luck with your scope! Hopefully you aren't too bad off because it takes a while for the LDN to work. If you could knock out any existing inflammation with short course of steroids and maintain with Pentasa I think that would be optimal. Untreated Crohn's is sort of like playing with fire. You don't want it to get out of control! :smile:

 

[Jam300]

It's hard to say how bad off I am as I display no syptoms and as far as i'm aware never have, hence needing the scope to show how i'm getting on. This is why i'm so keen to try LDN, why experience side effects when the disease isn't really a bother like some have to put up with.

I'm going to take pred/entocort/whatever is recommended in order to knock out the inflammation while LDN does its stuff, but do I really need Pentasa? Could you explain why?

Thanks again for your input, you and Kev are what got me looking for LDN in the first place so it really is appreciated.

 

[ctrl z]

You're welcome! :smile:

I guess it would really depend on where your Crohn's is if you needed to be on Pentasa or not. Mine is in a little spot at the TI and I use it to keep the inflammation down there. My thinking is that if you can get the inflammation down with a short course of steroids, then maintenance therapy with Pentasa will keep that inflammation down and prevent it from reoccurring.

I suppose that wouldn't be of any help if your Crohn's was somewhere other than the TI. :biggrin: But if it is, I think that'd be a good plan. Your doctor would know better than me, of course.

 

[Jmrogers4]

I have to agree I don't think there is a good answer to what makes someone a good candidate for LDN just like the other treatments out there what works for one doesn't necessarily work for others.
In my opinion you need to move forward with the facts you have a hand after you get your scopes done. My son did not take anything other then the LDN and we did have small flare about 2 weeks in which we controlled through EN. If I had to do it over again I would have probably kept him his Imuran while waiting for the LDN to kick in - I don't think we would have had a flare if we had done so.
He has been feeling great except last couple days when he has felt an urgent need for a BM while out running errands but he says he is not having pain and it was solid and it was his only BM of the day on both days so I'm chalking it up to all the Christmas activity and staying up late, getting up early and eating a bunch of junk, so for now we are just watching his diet and keeping an eye on him. Which goes to show you even though LDN is a wonder drug for so many we have to remember you are not cured and the CD can still rear its head.
Keep us posted, let us know how the scopes go and if you decide to go the LDN route

 

[Jam300]

Interesting, my Crohn's is in my TI so perhaps then Pentasa would be a good choice. Isn't that the point of LDN though, to maintain the intestines defence against inflammation?

My GI at present wants me on Aza, and i'm not sure how well she'll take the idea of me going off to take LDN let alone asking her to pescribe another medication to partner it that isn't the one she wanted. But we'll see I guess. I'm fully expecting her not to endorse my use of LDN but still agree to monitor me, who knows, perhaps I can get her pescribing it to others if I do well.

Glad to hear your son's doing well Jacqui, his bowel cut reminds me of what my mum used to do to my hair when I was younger!

 

[Jmrogers4]

yes, we went for a haircut directly after the picture was taken, thankfully for him I don't cut his hair anymore.
The aza takes just about as long to work as the LDN so it would be hard to say which one is doing its job when they kick in which is why I think Ctrl Z was talking about Pentasa as if I remember right from when my hubby was on it. It doesn't have to build up to theraputic levels like aza.

 

[ctrl z]

Yeah... it takes a while for the LDN to kick in and Pentasa is like an immediate topical anti-inflammatory. Would be good to have it when you are finished with a round of steroids and use while the LDN takes its time to kick in. It's a safety net pretty much.

 

[Kev]

Well, perhaps the most important 'reason' my GI agreed to trial me on it way back when was that I was in terrible trouble... my disease was raging AND expanding at an alarming rate... and nothing in the traditional meds had worked (excepting steroids, and since docs won't/can't keep you on them, it didn't offer a viable long term alternative). Having run out of options (well, almost... but the options left were very scary) she was agreeable to at least looking at LDN (remember, this was back in 07), and having looked at it, thought that at worst it would do no harm; and at best it might offer a solution. However, she did insist on keeping me on 5ASA... (Asacol, Pentasa, Salofalk, etc..) as it at least was considered a traditional med... tho I've never witnessed any benefit from it and I'd been taking it for years. To me, the 5ASA approach is like going fishing with a shotgun. No matter how many shots you take at the water, doesn't mean you actually are going to hit a fish. I'm not so sure 5ASA does no harm. I think it does no good, and may pose a risk. Seems to be a lot of info being generated that it really doesn't belong in the treatment of IBD, but continues because of it being grandfathered into treatment.